Linda.Locke@p0.f4210.n124.z1.fidonet.org (Linda Locke) (02/27/90)
Index Number: 6968
Anyone out there have MS. If so I'd like to hear from you. My times up.
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!124!4210.0!Linda.Locke
Internet: Linda.Locke@p0.f4210.n124.z1.fidonet.orglee@smiley.mitre.org (Annabelle Lee) (02/28/90)
Index Number: 7000 Linda - there are many people on this net that have MS - myself included. What would you like to know??? Regards, - Annabelle Lee, phone: (703) 883-7105 The MITRE Corporation, 7525 Colshire Drive Mc Lean, VA 22102 Mail Stop Z268 (new mail stop) e-mail address: lee%smiley@gateway.mitre.org
Al.Manning@f223.n163.z1.fidonet.org (Al Manning) (03/01/90)
Index Number: 7015
Hi Linda
I have MS too. It was diagnosed about 6 years ago. I guess you
could call my level of imparement as "moderate". I am in the
Canadian Navy - and have not been released to date. But I have
been retained with restrictions - which means that I cannot be
promoted or sent on any course that is not essential for the job I
am doing. Right now I am a staff officer in National Defence
Headquartes. One of the dreaded staffies.<grin> I hate staff work
but it keeps a pay check coming which is important with a daughter
in university and a son in high school.
Hope to hear more from you.
cheers Al
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!163!223!Al.Manning
Internet: Al.Manning@f223.n163.z1.fidonet.orgGary.Bewell@f34.n129.z1.fidonet.org (Gary Bewell) (06/01/90)
Index Number: 8563
By now you are probably out of the 'hellish' situation with your mother.
As others have said, I feel your mother needs psychological help.
Her problems can't be blamed totally on MS. Her behaviour is that
same as that exhibited by 'normal' people. She is milking her
'disability'.
I have no idea what support systems are common in the States. Here
in Canada, we generally have social workers available through the
MS Societies as well as peer and spouse groups. At the medical
level, we have psychologists who specialize in helping people with
chronic neurological disorders, and occupational therapists that
could assess what a person with MS can do.
Reading between the lines of your messages, I think you still love
your mother even though she has been a royal pain. My concern
would be for your father. I can just imagine the guilt trip that
has been laid on him. It probably goes along the line of "If it
wasn't for you, I wouldn't be in a wheelchair.", etc.
I think he could really benefit from a spouse support group. At
least then he could vent some of the frustrations that he must have
pent up inside him.
I hope you are now enjoying your new home. Good luck.
Gary
# Origin: T.P.V. - Calgary, Alberta, Canada (NETWORK 8:7500/198)
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!129!34!Gary.Bewell
Internet: Gary.Bewell@f34.n129.z1.fidonet.orgGary.Bewell@f34.n129.z1.fidonet.org (Gary Bewell) (06/01/90)
Index Number: 8564
EM> She has an appointment
EM> with some man in Germany named Napier (something like
EM> that) on July 4 and she seems to feel that he is going to
EM> cure all...I doubt it or the treatment would be in the
EM> U.S. Have you ever heard of him?
If he was doing such a miracle, I'm sure I would have heard of him
by now and I would have seen him myself. The miracle can only come
from within. Most people who go to faith-healers return doing more
than they did before. They return feeling motivated and start
working toward their true potential. I hope your mother does too.
Some friends of mine were going to pay my way to the Philippines to
see faith healers there. I didn't want then to waste their money.
Ironically, the faith-healer died a few months later and nothing
more was said about it.
Where I don't believe in faith-healing, I do believe in the power
of the mind. MS does create physical limitations, but my mind
comes up with ways to get around them.
Gary
# Origin: T.P.V. - Calgary, Alberta, Canada (NETWORK 8:7500/198)
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!129!34!Gary.Bewell
Internet: Gary.Bewell@f34.n129.z1.fidonet.orgElizabeth.Mccrary@p0.f15.n114.z1.fidonet.org (Elizabeth Mccrary) (06/04/90)
Index Number: 8603
We are not in our new house yet but hopefully the weekend of the 1st
of June we will be moving in. Yes, I still love my mother. After
all she is my mother. I love her dearly but she has got to learn
somehow and sometime that there are others in this world besides herself
and no matter how sick she is or how loud she yells or complains,
the end result is she will still have M.S. and will have no family.
The friends have already taken a walk because they don't have to take
that kind of treatment. I wish I could get her to see a psychyatrist
or a psychologist. I think I said earlier that she will see a counselor
once in a while when she thinks she has gone to far. She will go
see her and then come back little miss goody two shoes and be a total
joy for 2-3 days and then the terror is back. I would like my father
to go to one of the support groups but he says that he doesn't have
time. I think maybe, he has been around her so long he is sick in
the head as well. He is all defensive of her all of a sudden. And
it is not because he loves her..that much I know. Beth
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!114!15.0!Elizabeth.Mccrary
Internet: Elizabeth.Mccrary@p0.f15.n114.z1.fidonet.orgGary.Bewell@f34.n129.z1.fidonet.org (Gary Bewell) (06/05/90)
Index Number: 8609
FW> What's bad is my wifes cognitive abilities were
FW> severely involved.
I can't remember if you mentioned that your wife was on Tegretol or
antidepressants for pain. If she is, they might be causing the
problems rather than the MS.
When I was on these types of drugs, I was disoriented, became
easily lost, and drove my van into a pole. All the problems
disappeared when I stopped taking the pills.
This is just a thought.
Gary
# Origin: T.P.V. - Calgary, Alberta, Canada (NETWORK 8:7500/198)
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!129!34!Gary.Bewell
Internet: Gary.Bewell@f34.n129.z1.fidonet.orgEric.Bohlman@p1.f778.n115.z1.fidonet.org (Eric Bohlman) (06/09/90)
Index Number: 8736
FW> Thanks the drugs she's been on for years so I don't think
FW> that's the problem.
Don't forget that as people get older, their ability to metabolize various
medications usually declines. What can happen is that the patient, on a
constant dose, will react as if the dose were being slowly but steadily
increased.
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!115!778.1!Eric.Bohlman
Internet: Eric.Bohlman@p1.f778.n115.z1.fidonet.orgAaron.Feldman@f204.n260.z1.fidonet.org (Aaron Feldman) (09/13/90)
Index Number: 10344
Hello Al,
Glad you answered. Its beginning to feel quite friendly here. I think
my main interpersonal grip having to do with MS (don't that you asked
but maybe you can share/or relate). Is the business. But you look so
good!!! How can you be sick!!! i feel many times like a malinger (sic).
I carry a cane, drag a leg and get extremely fatiqued. But the latter
doesn't show and if I happened to be seated well! (grin) Sometimes
I begin to think I am crazy because I have been told by neurologist
and therpaist I have the real need to limit activites becasue of difficulties
that arise when I keep on trucking and yet even people that know me
respond as if I am "babying" myself and then I try to ask like the
ABLEDs and I get in trouble. Well hello again Al. Let me hear from
you, Aaron
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!260!204!Aaron.Feldman
Internet: Aaron.Feldman@f204.n260.z1.fidonet.orgAaron.Feldman@f204.n260.z1.fidonet.org (Aaron Feldman) (09/13/90)
Index Number: 10346
Thanks for your hello. I was interested particularly when you mentioned
you were out of ways of "outsmarting" your MS. Can you explain a little.
I have been really scared lately that if I stop pushing I am just not
going to be able to move anymore. everything has gottent o be a major
effort. as I told the others the real hard part for me is whhen the
ABLED go "but you look so good" in my response to trying to limit myself.
I have had such silly things happen as being embarrrassed by carryin
a cane (I need really more support now) so walking without anything
in a mall only to find myself falling down like I was drunk and unable
to get up. I didn't know what to say to anyone. I still dont know how
to answer that. Just passed up going to my best friends wedding which
bothered me a lot. I was going than I wasn't etc etc etc until I was
going crazy. Than I suggested to the person who was driving(wedding
was in NYC which is 6-7 hours from here and it was expected to due
round trip and wedding in one day. Leave at 1 pm back at 5am) that
it might be best if I took a wheelchair. That sort of settled it. He
said if you feel like that stay home. (hummmm)>Anyway, hello and lets
keep talking.
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!260!204!Aaron.Feldman
Internet: Aaron.Feldman@f204.n260.z1.fidonet.orgAl.Manning@f223.n163.z1.fidonet.org (Al Manning) (09/18/90)
Index Number: 10421
Hi Aaron
I know what you mean by the bit of looking OK etc but you get tired
out very easily. I know that I felt like a malingerer for quite
some time (couple of years). I would like to get back to that.
The current nonsense of using a wheel-chair most of the time is the
pits. But do not ever let anybody tell you that you are only using
the chair (if you ever start - and praise the lord you won't)
because you are lazy. In that case (happened once) I arranged for
the turkey to use a friends old chair (old S&J - built like a tank
and damn near as heavy) for half a day. I never heard that stupid
statement again. I guess I mayt have been lucky with a neurologist
who could relate and a supportive family and co-workers.
Cheers Al
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!163!223!Al.Manning
Internet: Al.Manning@f223.n163.z1.fidonet.orgJean-pierre.Beland@f223.n163.z1.fidonet.org (Jean-pierre Beland) (09/18/90)
Index Number: 10423
Hello, Aaron,
I see that you are in Rochester, NY. We are in Ottawa, Ontario
here. I think it does not show the name of th city in the origin
line.
Just to let you know that you are not alone "looking healthy".
Six years ago when I started dragging my right leg, I did not know what was in store for me. I am still walking and dragging that leg sometimes. But the doctors cannot make their mind if it is MS or MD.
People are real friendly here and helpful.
cheers, J.P.
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!163!223!Jean-pierre.Beland
Internet: Jean-pierre.Beland@f223.n163.z1.fidonet.orgAdrienne.Barhydt@p0.f14.n105.z1.fidonet.org (Adrienne Barhydt) (09/18/90)
Index Number: 10424
Hi Aaron,
It seems like a lot of what I've been going through the last few
months and am still working on now would be relevant to you also.
I'm finding it kind of difficult to slow down my mind and focus
on what I want to say. I had this same problem writing to a
friend last week and she wrote back and said it's because it is
all still happening. It's not quite ready to be in words yet.
Anyhow, I think I can get a few things said.
>I have been told by neurologist and therpaist I have the
>real need to limit activites becasue of difficulties that
^^^^^^^^^^^^^^^^^^^^^^^^^^^^^
>arise when I keep on trucking and yet even people that know
>me respond as if I am "babying" myself and then I try to ask
>like the ABLEDs and I get in trouble.
I have had to recognize and believe and accept that the physical
changes happening to me are real. The limitations are real. I
used to be so proud and say I'd never push myself to my limits, I
knew how to pace myself. Wrong-o! I was pacing myself to the
point that every single day I squeezed out every last little bit
of energy I had. I was not taking care of myself. I wasn't
doing things the easiest way possible either, I was wasting a
good part of the limited energy I had.
I feel sort of like I'm going out on a limb to say things about
your friends when I don't know them and scarcely know you but it
seems to me like they are more of a hindrance then a help. I
feel like I want to knock their heads together and say "wake up!
Aaron's disabilities are real. He is not babying himself. He is
trying hard to take care of himself and he needs your support not
put-downs." Realistically speaking, I don't know what to
suggest that you do about their attitude.
I have not run into the "But you look so well" comments. I think
that is for two reasons. One is that for a good stretch of time
I was cutting myself off from contact with people - there wasn't
much of anyone to say it. Two, when I go out, I can only go out
when I am at my best. I work four mornings a week. I work first
thing in the day so that's where the best of my energy goes.
Nobody sees me when I fall into bed when I get home from work.
Nobody sees that I go to bed at 9:30 on work nights. When I go
out I have to make sure I will have enough energy to get myself
back home. I went to the mall last Saturday and it was a battle
to get myself to quit and go home. I stayed a little longer than
I should have, but I left soon enough. So anybody who saw me
zipping around on my 3-wheel electric scooter saw me cheery and
healthy looking. Oh, there is a third reason - luck, just plain
luck.
>I have been really scared lately that if I stop pushing I am
>just not going to be able to move anymore. everything has
>gottent o be a major effort. as
I know the feeling. I sat down at the computer about two hours
ago and realized immediately that I left some documentation I
need in the family room, two rooms away. I haven't got up to get
it yet. That's too far to walk for something I'd like to have
but don't absolutely need right now. Wanna hear something really
scary? I am afraid that if we keep on pushing we'll get to where
we can't move anymore even sooner. I think the key to it is to
redefine push and to learn the right way to do it. I went for
physical therapy and occupational therapy and learned a lot. I
just started seeing a physiatrist (rehabilitation doctor) for
knee pain and she is sending me for a new brace and more physical
therapy to learn a better way to walk with the new brace.
It's clear to me that my neurologist, physiatrist, physical
therapist and occupational therapist all want to keep me mobile
and independent. They are teaching me better ways to do all the
things that I do that are in any way physical. The OT showed me
a one-handed electric can opener. No more using that crazy
manual thing that I had to just wail on with both hands and hope
that I wouldn't pinch the flesh between thumb and forefinger
trying to get it to puncture the stupid can. The PT taught me
among other things how to get out of bed and how to get up off
the floor. I do a stretching program twice a day that the PT set
up for me and some very light leg exercises on an energy
available basis. Yes, you do have to keep using muscles and keep
them stretched but learn how from someone who knows the right way
so you don't injure yourself and don't overdo it.
Really, the basis for all the changes I am in the process of
making has been a large change in attitude in myself. I have
been going for counseling for a few months and I am coming to
grips with reality. This disease is doing bad things to my body.
That affects EVERY aspect of my life. It affects every little
thing I do. But I am still me. I have all the interests I ever
had, all the likes and dislikes. I don't have the same physical
capabilities. I am learning to accept myself as I am. I am
sorting out what is most important to me. I can't do anywhere
near as much as I used to but I can still accomplish important
things.
Using a cane is a drag but walking without it is next to
impossible, so I use it. But even with the cane I can't walk
far enough to work or shop or go to the library or the park or
to a concert, so then I use my scooter. They are tools. They
help me do things that I could not do otherwise. But I began
using them having learned societies attitudes towards them. I am
not all the way past those attitudes yet but it is very very
clear to me that I cannot function without them.
I used to not understand it when my grandmother didn't want to
use a hearing aid. I could only look at it pragmatically and ask
why wouldn't someone use something that would let them hear. Now
I understand more of the emotional response to such things. I am
experiencing the loss that is made so much more vivid as I sit
out in the world on that infernal, wonderful machine. I've done
some grieving for the losses and I am sure that I will do more
but getting through the grieving makes the acceptance possible
and the acceptance makes so much more possible.
I've babbled on for long enough. I hope that some of this will
help you. Please ask more questions if you have them. And tell
me also what works for you. I am learning so much and there is
so much more still to learn.
Take it easy....but take it!
Adrienne
P.S. You've mentioned in several messages that you are shy. I
am very shy too. This is a great place for shy people. I find
it possible to communicate here in writing in ways that I just
can't do face to face. So, stick around, okay?
-A
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!105!14.0!Adrienne.Barhydt
Internet: Adrienne.Barhydt@p0.f14.n105.z1.fidonet.orgGene.Zeak@p0.f219.n137.z1.fidonet.org (Gene Zeak) (09/20/90)
Index Number: 10531
Hi Adrienne,
Just thought I'd butt in long enough to say hello and make a
couple comments.
AB> trying hard to take care of himself and he needs your
AB> support not
The lack of energy is, as we know, a real problem. I guess I'm
fortunate as I've never really worried about the opinions of
other too much, but I have learned that it is possible to defend
myself (so to speak) against the faulty thinking of other without
getting mad at them, putting them down, or exalting myself in any
way. I look at it as they just simply don't understand and will
explain things to them...once. More than that if there is an
emotional attachment, like they are family, etc.
After explaining, I know that I have done what I can and feel
remorse that they still don't understand, but realize that to be
a result of something in them, not my failure. I don't mean I
"pity" them or have any such negative feeling about them, but I
just am sorry that there will always be those who somehow refuse
to understand. I can't spend my finite resources on them...that
would be unfair to many others, including me.
AB> I have not run into the "But you look so well" comments. I
AB> think
I have, and there is no real way to combat it. The other person
will either have it in them to understand that there are some
conditions that don't show (like a flashing neon sign on your
forehead) or they don't...simple, isn't it? Not easy, but
simple!
Later, Gene...
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!137!219.0!Gene.Zeak
Internet: Gene.Zeak@p0.f219.n137.z1.fidonet.orgAaron.Feldman@f204.n260.z1.fidonet.org (Aaron Feldman) (09/20/90)
Index Number: 10536
Thank you for your input. I understand myself better after reading
you and others. I had thought I was becoming a recluse because I too
will only let people see me when I feel I have the energy. A psychiatrist
was suggested for me because of it. I find my biggest problem is helping
others understand what has and is happening to me. My Rabbi is a sympathic
guy (but empathy might be better). I tell him I am tired and he says
"Thats OK I will just stop bye and we can talk". Or another friend
doesn't understand when I feel I can't stop bye. What I am trying to
say is I have not the energy for conversation or even to listen much
of the time and sometimes I am so angry inside at people for making
demands on my time. And yes it turns to depression becasue I one hand
I want to scream leave me alone and on the other I don't want them
to. I just want them to understand that I am tired.
This week I have pushed myself so far I think it is true the place
I am fearing may come sooner if I don't learb to guage my activities
better. I really appreciate talking to you..all of you, Aaron
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!260!204!Aaron.Feldman
Internet: Aaron.Feldman@f204.n260.z1.fidonet.orgAdrienne.Barhydt@p15.f41.n105.z1.fidonet.org (Adrienne Barhydt) (09/21/90)
Index Number: 10569 >others. I had thought I was becoming a recluse because I too will only let >people see me when I feel I have the energy. A psychiatrist was suggested >for me because of it. I am just finishing up some counselling. It has been very helpful. The counselor I've been seeing has some connection with the MS Clinic in the local University hospital so she sees people with MS and is knowledgeable about many aspects of the disease. She's helped me to see and accept some of the realities of my situation and to understand that I have options and though I am dependent in a lot of ways, I am still in control of my life. I am sure there are other ways to accomplish the same sorts of things other than counseling. >I find my biggest problem is helping others understand >what has and is happening to me. My Rabbi is a sympathic guy (but empathy >might be better). I tell him I am tired and he says >"Thats OK I will just stop bye and we can talk". Or another friend >doesn't understand when I feel I can't stop bye. I've spent a lot of time waiting and hoping that someone will tell me all the answers so that I will be able to deal with other people. I think the sad reality is that there is no bundle of answers. I think that to a significant extent we each have to be both inventor and teacher. Did you read Gene Zeak's message to me where he says that he explains things to people once? It seems like there is some risk in that but there is also risk in trying to use energy that you just don't have. I guess what I am trying to say is that we each need to try to find and stick to our own limits. >What I am trying to say is >I have not the energy for conversation or even to listen much of the time >and sometimes I am so angry inside at people for making demands on my time. >And yes it turns to depression becasue I one hand I want to scream leave me >alone and on the other I don't want them to. I just want them to understand >that I am tired. The fatigue is just so incredible. It really is amazing to be too tired for conversation or listening. But that's how it really is. It's funny when I try to describe things I experience I can't find the words to do it, the normal words don't describe the sensations. I try to tell my husband that fatigued and sleepy are two entirely different things to me. One does not imply the other. Resting helps the fatigue but sleeping when I am not sleepy only sets me up for a night of insomnia. I am trying to sort out what is important to me so that that is how I can spend my limited amount of energy. Perhaps you can "schedule" your conversation times for when you have more energy, maybe tell someone who wants to talk that you need to lie down for an hour first. Dare I say it? I am afraid I'll jinx myself if I say it out loud but I'll risk it anyhow. The last few days I've been noticing that I am not falling into bed totally spent every night. I am sleepy but my body is not dead weight like it used to be. Also, the fingers on my left hand are working better. I am typing this two handed for a change! Could it be slowing way down is paying off? Take it easy....but take it! Adrienne -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!105!41.15!Adrienne.Barhydt Internet: Adrienne.Barhydt@p15.f41.n105.z1.fidonet.org
lee@smiley.mitre.org (Annabelle Lee) (09/22/90)
Index Number: 10610 Aaron - this may be a little late but I wanted to add my two cents worth!!! I too have MS and am one of those that does not have an "obvious" disability. My primary problems are vision, hearing, and balance. I frequently get the comment "But you don't look sick." I generally ignore the comment. I also work part-time and get MANY snide comments on gee it would be nice to only work part-time. My general response is, yes it is nice, but would you like my part-time salary? That usually quiets them!! I very much empathize with the problem of fatigue - I get so frustrated not being able to do all the things I want to. I have learned to be "hard boiled" about it, and if people get offended that is THEIR problem. I have learned to concentrate on the activities I enjoy and do what I can. The hardest part is not lashing out sometimes in frustration. If there is anything I can do - feel free to let me know!!! Regards, - Annabelle Lee, phone: (703) 883-7105 The MITRE Corporation, 7525 Colshire Drive Mc Lean, VA 22102 Mail Stop Z268 (new mail stop) e-mail address: lee%smiley@gateway.mitre.org
Chris.Brown@f223.n163.z1.fidonet.org (Chris Brown) (11/06/90)
Index Number: 11573
It was very interesting to read your physicians advice about
refraining from certain foods to possibly ameliorate MS problems.
We have a couple of members in the Ottawa Chapter of the Allergy
and Enviornmental Health Associaiton of Canada who were diagnosed
as having MS, who occasionally go back into their symptoms when
exposed to certain chemicals or foods. There is one woman who
looses the use of her legs whenever she comes into town. She and
her doctor have tracked down petrochemical fumes as triggering her
symptoms, among some other substances she is sensitive too. That
isn't to say her problem is caused by petrochemicals...It would be
more accurate to say she is sensitive to some chemicals, and that
in ther case her symptoms are the same as those of some MS
patients.
After a couple of decades of being told such problems are "all in
the mind", canadians with sensitivities now find we have a health
Minister who has turned his department around, and who has stated,
categorically, that in ambiguous cases, chemical sensitivities
should be ruled out before a psychiatric work-up is done. The best
report on the subject in the U.S. was done by Nicholas Ashford
(M.I.T.) and Claudia Miller (UofTexas) for the New Jersey State
Department of Health, Dec. 1989.
SSensitivities were found to affect pretty well any system of the
body by reports in Ontario, Nova Scotia, Britain, New Zealand, and
the World health ORganization. Unfortunately, in some parts of the
world (ibcluding some States of the land where poeple are free and
happy) doctors and health officials seem more interested in
covering up the fact that previous statements, which caused milions
of doallars damages, were not only wrong, but irresponsible,
unethical, illogical, unscientific, etc etc etc.
Although chemical sensitivities can affect any system of the body,
one point that critics have bee very right on has been to
ciriticise those who see sensitivities as the cause, and avoidance
of chemicals involved as the cure, for every instance of every
unexplained disease, (Surprise, surprise, those who made these
over-stated health claims were mostly from california!!!) But when
there is an unexplained chrinic health problem, certainly CERTIANLY
there is reason to check out whether a sensitivitity to either
natural or synthetic chemicals is causing the problem. (We also
have several members who had previously been diagnosed as
epileptic, although again, I am NOT saying that epilepsy, in
general, is caused by sensitivities.)
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!163!223!Chris.Brown
Internet: Chris.Brown@f223.n163.z1.fidonet.orgAaron.Feldman@f204.n260.z1.fidonet.org (Aaron Feldman) (11/08/90)
Index Number: 11631
Don, Thank you for your timely and thoughtful response. Its hard to
believe you are picking this up all the way down under. Talk about
miracles. Anyway the MS society here is quite good about literature and
I have read most of what I can get my hands on. For me, I think the most
difficult part of this disease is feeling like I am living a lie. I look
fine (sitting) feel so darn tired and feel sometimes I don't fit in the
ABLED world and at the same time deny that I have any disability. I
don't know how long it takes after being diagnosed (8 years here) to
stop the denial. This denial I don't believe is the poor me variety it
is insidous and this I do realize and soemtimes it seems almost
unconscious. EG a friend was going to a concert last night I wanted to
go but I had such fatigue I could not move my leg. But instead of being
honest, I lied to him and said I had to go elsewhere. I felt I can't
explain to him (or even to myself ) what is wrong for it makes
absolutely no sense to me. It always keeps coming back to that point for
me i.e, it makes no sense to me why I can't do a particular activity.
Thus perhaps a poor me comes along when I start to feel I am differernt
from others and yes I do retreat until I have more stamina. I hope this
makes sense to you. Now my friend what to go on a day trip which I know
I can't muster the energy for and I am busing myself thinking of an
excuse because the reality seems so incrediable to me. Thanks againa and
pls let me hear from you. I found your letter really infomrative and was
interested in the mention of a diet. No one up here has made mention of
it. Thanks again, Aaron
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!260!204!Aaron.Feldman
Internet: Aaron.Feldman@f204.n260.z1.fidonet.orgDon.Blair@p0.f869.n681.z3.fidonet.org (Don Blair) (11/17/90)
Index Number: 11761
AF> Don, Thank you for your timely and thoughtful response. Its
AF> hard to believe you are picking this up all the way down under.
AF> Talk about miracles.
Yep the modern computer and communications systems are amazing..
So amazing in fact that our Government controlled communications network is
looking at introducing timed local calls, they would tax breathing if they
could...
AF> For me, I think the most difficult part of this
AF> disease is feeling like I am living a lie. I look fine
AF> (sitting) feel so darn tired and feel sometimes I don't fit in
AF> the ABLED world and at the same time deny that I have any
AF> disability.
Denying you have this disease is lying to yourself.. As for hiding it from
your friends, they can't be very close friends Aaron... It can be
difficult at times when you look quite normal for other people to take your
disability into account. I know of this, I once told my wife that I
wished it was more obvious to others when they are bustling all around me
or talking AT ME at a rate of knots that mades me feel quite ill.
She is a great leveller my wife.. They don't really give a F**K if your
not well or if their behaviour in any way contributes to how poor you feel.
She exclaimed...
Once again I have to admit she is quite right.. (Oooo I hate it when she's
so BL**DY right all the time).. Serves me right for marrying an intelligent
woman I suppose..
AF> It makes no sense to me why I can't do a
AF> particular activity.
You mean you can actually FLY or transport yourself???
I think you might be wallowing in self pity a bit by the sound of your
thread there (No Offence Aaron).. I don't know you and have only been
getting this echo for a short time. I also work hard at having a non
judgemental approach to people, but try to look on the bright side of life
will ya! One of the things that has always got my back up (even B4 I got
this disease) were Hypercondriac's. I'm not accusing you of being one of
these but as I said B4 in a previous posting Life could be a lot Worse!!
If you have ever seen one of those Horror/War Movies/Newsclips you can
surely see that having MS is better than a lot of other thing's that could
happen to you in this life....
AF> I found your letter really
AF> infomrative a interested in the mention of a diet. No one up
AF> here has made m it. Thanks again, Aaron
That diet of which I spoke has been known to prolong periods of remission
but is not a cure unfortunately.. In fact I have my doubts that even when
they do discover the cause of this disease they will be able to repair the
Myelin which is already damaged, particularly after seeing my MRI scan
which showed where big blobs of Myelin had scarred in my brain..
Take Care.. Don...
p.s. I should soon have a disabled parking permit too, so I will be able to
get angry as well.
Lifes like that.. :=)
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!3!681!869.0!Don.Blair
Internet: Don.Blair@p0.f869.n681.z3.fidonet.orgEric.Bohlman@p1.f778.n115.z1.fidonet.org (Eric Bohlman) (11/19/90)
Index Number: 11844
DB> So amazing in fact that our Government controlled communications
DB> network is
DB> looking at introducing timed local calls, they would tax breathing if
DB> they
DB> could...
Privately owned phone companies also do the same thing, unfortunately.
DB> AF> It makes no sense to me why I can't do a
DB> AF> particular activity.
DB> You mean you can actually FLY or transport yourself???
Very good point. In fact, we sometimes forget that a lot of the
devices we have are really prosthetic devices to compensate for
disabilities because the disabilities are commonplace or
universal. Airplanes compensate for being born without wings and
telephone systems compensate for our inability to speak loud enough
to be heard miles away. Getting closer to the point, few people
regard eyeglasses the way they do wheelchairs, but without them a
lot of people we consider able-bodied would in fact be severely
disabled. People who regard you as inferior because they can do
something you can't are really trying to hide their insecurity;
deep down they know the reason for the difference in abilities is
that they're simply lucky and 1) they don't want to face the
possibility that their luck might run out and 2) they were brought
up to believe that you can do anything if you take enough
responsibility, and they interpret that as meaning that
responsibility is a sufficient condition for achievment as well as
a necessary condition (meaning that if one doesn't succeed, it'd
due to lack of responsibility. Saying that lack of responsibility
results in lack of success DOES NOT logically imply that lack of
success is always due to lack of responsibility, anymore than the
fact that you can't win the lottery without buying a ticket implies
that everybody who didn't win the lottery didn't buy a ticket).
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!115!778.1!Eric.Bohlman
Internet: Eric.Bohlman@p1.f778.n115.z1.fidonet.orgAaron.Feldman@f204.n260.z1.fidonet.org (Aaron Feldman) (02/01/91)
Index Number: 13318
Thanks Gary for the insight. I was aware that fatigue was related to MS
but not the extent. No one has gone into any explanations with me. Not
being able to get a neurologist being reffered back to my internalist
who says he knows very little about "your disease" I don't get much
data. I was wondering about something else. I have noted that when I am
cool I have more energy, at night until about dawn I find myself quite
warm and find it impossible to sleep. As soon as my body cools off I
find I can fall to sleep. I told this to the doctor and he said I had a
wild imagination and it was the first time he had evert heard anything
like this. I know just getting dressed tires me out most days and often
I wonder is it worse it. I am thank ful I have a job or I wonder if I
would get out of the bed. No this is no depression, I just feel
exhausted and tired from hauling my body around. My left side has become
extremely week over the past several months and my right hand makes a
good decoration. Someone told me I look like an old man from the rear.
This bothered me. I don't know why but it did. This thing is hard becos
people don't want to hear about it and I am suposed to pretend it isn't
there becos I look normal (not underweight or sick etc). But something
is very wrong. The only place I get support is here on this board. I am
very thankful to you and the others for taking the time to repsond to me
and mostly for hearing what I am saying. Shalom, Aaron
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!260!204!Aaron.Feldman
Internet: Aaron.Feldman@f204.n260.z1.fidonet.orgAdrienne.Barhydt@p15.f41.n105.z1.fidonet.org (Adrienne Barhydt) (02/01/91)
Index Number: 13325
hi aaron,
tell your doctor you are NOT the only one. i have had the same sleep/heat
problem for several years. i am usually cold when i go to bed. during the
night i get hotter and hotter until i can't sleep. sometimes i can cool off
enough just by sitting on the edge of the bed, out from under the covers for a
few minutes. many other times i have to get up to read/compute/listen to radio
for an hour till i can cool off thoroughly. recently, it has not been as bad.
i wish i could tell you something specific i did to make it happen but i am not
aware of having made any changes. based on my experience i found it was well
worth getting up for an hour in order to be able to get some sleep after that.
i hope this will help you some.
adrienne
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!105!41.15!Adrienne.Barhydt
Internet: Adrienne.Barhydt@p15.f41.n105.z1.fidonet.orgAdrienne.Barhydt@p15.f41.n105.z1.fidonet.org (Adrienne Barhydt) (02/01/91)
Index Number: 13326
hi aaron,
there are other sources of information than your doctor. here are some.
BOOKS
Wolf, John K., ed. Mastering Multiple Sclerosis - a Handbook for MSers and
their Families, Academy Books, 1984.
Scheinberg, Labe C. Multiple Sclerosis - A Guide for Patients and Their
Families.Raven Press, 1983.
I'm sure their are more recent editions of both. Where to get them for free?
try your public library. if your local branch does not have them ask them to
check the headquarters library. if hq doesn't have them., ask if they will
Interlibrary Loan them for you. If you do this be sure to ask if there is any
charge.
try your college library. did you go to college in rochester? do you live in
rochester? i saw it in your origin line. college libraries often issue cards
to alumni.
i know you don't have the energy to be running to all these places. i
certainly don't. do what you can by telephone. find out if the library has an
on-line catalog you can dial into.
try the local office of the national ms society. (yes, they are good for some
things.) they may have a collection of books they will lend out.
MAGAZINES
the national ms society puts out a pretty decent quarterly magazine. if you
are not already a member let me know and i will send you the address. their
magazine is pretty good and membership is free to msers. some of their other
publications are also pretty good.
Science News
this is probably not worth a special trip to the library. they seem to have
articles on ms and ms research a few times a year but unpredictably. they got
an award from the natl. ms society a year or 2 ago for their coverage of ms
news. the last issue of the year indexes the past year so you can locate the
articles that way.
that's all for now.
adrienne
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!105!41.15!Adrienne.Barhydt
Internet: Adrienne.Barhydt@p15.f41.n105.z1.fidonet.orgStu.Turk@f26.n129.z1.fidonet.org (Stu Turk) (02/01/91)
Index Number: 13328
Adrienne Barhydt of 1:105/41.15 wrote to Aaron Feldman:
AB> sleep/heat problem for several years. i am usually cold when i
AB> go to bed. during the night i get hotter and hotter until i
AB> can't sleep. sometimes i can cool off enough just by sitting on
AB> the edge of the bed, out from under the covers for a few minutes.
Have you ruled out an allergy to the sheets, matress pad, and laundry
detergents that may still be in the sheets (especally the softener if you toss
one of those softener pads into the dryer when you do laundry)? Another
possibility is the stuffing in the pillow. I believe some allergies do may you
feel hot.
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!129!26!Stu.Turk
Internet: Stu.Turk@f26.n129.z1.fidonet.orgAl.Manning@f223.n163.z1.fidonet.org (Al Manning) (02/09/91)
Index Number: 13625
The superb post regarding MS and fatigue reminded me of a talk
with my neuro about a year ago. I had had a dandy flair up - what
a Nova Scotian would call a right some good blast up. Well the doc
asked if I had had a cold or anything to cause a fever. I said yes
I just got over a real very bad chest cold and yes I had a fever with
it. Doc pointed out that I knew the very bad exasperation (sp??) that
was caused by heat - too hot a shower, too long in the sun by the
pool etc. He then said "well Al heat is heat and it does not matter
one damn bit if it comes from outside or is generated from inside".
He went on rather emphatically that If I ever feel a cold coming on
or anything that will cause a fever I was to get my but (and have the
rest of the body follow) down to sick-bay to have the fever taken
care of before it can get a hold.
That turned out to be good advice. It has not stopped the steady
decline do to MS in general but maybe is what has prevented anymore
of the drastic and sudden flair ups. Or reduced the severity.
Take care, keep your sense of humour,
Al Manning
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!163!223!Al.Manning
Internet: Al.Manning@f223.n163.z1.fidonet.orgFrank.Whitney@f1000.n261.z1.fidonet.org (Frank Whitney) (03/16/91)
Index Number: 14027 >Can someone please explain MS to me? What are the beginning symptoms like >and why do they find it so hard to diagnose it initially? Is it just that >they dont want to make the diagnosis or is it really that difficult to >determine? Thanks in advance for any info! You just asked the 64 million dollar question. One of the reasons that it is so hard to diagnose initially is that it can affect people in so many different ways. With some people it will start with the eyes being affected. Many times with the eyes being the first sign of the disease the person will have less physical problems but not always. For those with physical problems occurring first it might be a sign of weakness, a numbing sensation. Most people with MS have problems with exposure to heat some have problems with the cold although that is generally less the case. I believe that in many of the cases that the doctor doesn't like to have to give bad news. This is especially true with MS since there is relatively little that can be done by the doctor in the way of treatment. I hope that gives you a little bit of an idea. I'm sure that others will be able to help you also. Frank. -- Via Opus Msg Kit v1.12 -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!261!1000!Frank.Whitney Internet: Frank.Whitney@f1000.n261.z1.fidonet.org
Frank.Whitney@f1000.n261.z1.fidonet.org (Frank Whitney) (03/16/91)
Index Number: 14029 >Can someone please explain MS to me? What are the beginning symptoms like >and why do they find it so hard to diagnose it initially? Is it just that >they dont want to make the diagnosis or is it really that difficult to >determine? Thanks in advance for any info! I forgot to mention that memory problems are now also associated with MS although you'll hardly ever find a doctor who will admit too it. I saw another message that went into the stripping of the nerve sheathing so I won't get into that but she covered many of the items that I didn't. After reading those messages you should see why the disease is such a pain. Speaking of pain you might also encounter phantom pain. Good luck. Frank. -- Via Opus Msg Kit v1.12 -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!261!1000!Frank.Whitney Internet: Frank.Whitney@f1000.n261.z1.fidonet.org
Gary.Bewell@f424.n104.z1.fidonet.org (Gary Bewell) (03/16/91)
Index Number: 14031
On 17 Feb 91, you wrote to All
PF> Can someone please explain MS to me? What are the
PF> beginning symptoms like and why do they find it so hard to
PF> diagnose it initially? Is it just that they dont want to
PF> make the diagnosis or is it really that difficult to
PF> determine?
Hi Patricia,
MS is a disease that attacks the central nervous system. That's
the nerves of the spine and brain. The protective covering on the
nerves hardens and breaks off. This is something like what happens
with an old electrical cord. You know how the plastic becomes
brittle and falls off. After this sometimes the cord shorts out
while other times it's okay. (MS is something like this, although
more often the hardened insulating material prevents electrical
impulses from getting through.)
There aren't any typical beginning symptoms. The first symptom
that I recall as being a common MS symptom was going 98% blind in
one eye. With prednisone I was able to reverse this to 98% vision
in the eye. Other common symptoms are abnormal fatigue, numbness,
tingly-ness, weakness, tremor, spasticity, blurred vision, urinary
problems.
It's hard to diagnose for several reasons. The doctors want to see
signs, not symptoms. A sign being something that is observable. I
can't remember how many signs they want to see, but it is something
like 4 or 5. Most people with MS live with a rollercoaster-like
life of flare-ups. I've found that if I'm experiencing a flare-up
and make an appointment to see a specialist, the 6-week wait for
the appointment is too long. By that time I'm in a remission. The
symptom has calmed down. To short-circuit the long wait you have
to have a very serious flare-up or an 'exotic' symptom. The main
categories of MS (I'm using main because I might have forgotten one
or two) are possible, probable and definite MS.
For me my eye specialist sent a letter to my family doctor saying
that I probably had MS in 1973. The medical profession ignored
this. It took from 1976 to 1981 to get a probable diagnosis. I
visited 29 specialists and had over 250 appointments. My definite
diagnosis came in 1985. I haven't been able to work since 1979.
(The definite diagnosis hasn't been accepted here because the
neurologists here didn't see the 'rare' type of seizure that I had
in Ontario. The seizure was videotaped. I was examined before and
after the seizure. After the seizure I showed more traditional
signs of MS.) Politics enters into the diagnosis as does a
misguided idea that the patient can't handle being told they have
MS. I suspect that if a study was done, the results would be that
most of us are relieved to finally have a label for our disease.
Beginning symptoms. There isn't a foolproof set of symptoms. Most
of the time we write off symptoms. I'm just having an off day. I
remember having problems with my wrists back in 1967. They seemed
to tire very easily. In 1970/1 I remember going through periods
where I could not get up I was so exhausted after doing nothing.
In 1974 I remember having foot drop when I was running. The foot
started to flap after I started running. I began wearing boots to
provide ankle support. I hope this gives you an idea of how
difficult it is to pin down early symptoms.
As an aside, nowadays more cases of MS are being diagnosed through
computerized 'x-rays' called MRI (magnetic resonance imaging).
These have a 90% reliability--not very good for nerves involved in
vision or in the brainstem. There are also a lot of diagnoses of
MS being made after a person dies. During autopsies doctors are
discovering people who didn't even know that they had MS.
I don't know if you have heard about the bell curve. It's used
used in statistics. Basically things like intelligence and also MS
follow the shape of a bell. At the outside edges there are very
few people. The majority are towards the centre. For MS on one
outer edges are those who have very little impairment and on the
other edge are those who are severely impaired and confined to a
hospital bed. The majority of us fall between these extremes.
If you think you or someone you know has MS, you might want to pick
up "Multiple Sclerosis: A guide for patients and their families"
editted by Labe C. Scheinberg. It is one of the best books on MS.
Steer clear of older books, they paint a depressingly grim picture
of life if you have MS. There is life after a diagnosis of MS.
<grin>
Gary
# Origin: Total Perspective Vortex,Calgary,AB (MetroNet 201:5500/198)
To respond netmail, use FSC-0038 DOMAIN lines or as 1st line of msg use:
@DOMAIN METRONET 201:5500/198 <your address: domain z:n/n>
=== FNPGate 2.50 Release
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!104!424!Gary.Bewell
Internet: Gary.Bewell@f424.n104.z1.fidonet.orgPatricia.Ferguson@f13.n123.z1.fidonet.org (Patricia Ferguson) (03/20/91)
Index Number: 14073
AB> know I've skipped a LOT here.
You actually covered it quite well for me. My husband was "tested" by way
of MRI and "nothing abnormal" was the report. We really believe it is
central nervous system lupus (which his sister has also) and not MS. But he
believes the neurologist has not ruled MS out completely yet. It scares him
terribly, has since he was young. He saw an advertisement on tv and it has
stuck with him ever since.
What sort of leg problems would be some of the more common ones at the
beginning based on your observations? Rusty has some leg problems but I
think it is just mainly aches and pains, such as an arthritic type pain,
especially in the hips. He does have nodules that come and go on his legs
but we believe that to be a low level of vasculitis. I guess what scares
him the most as far as symptoms go would be the vision problems. I haven't
read quite enough on the subject yet (not like the research done on lupus to
this point!). He has tingling and occasional numbness in his extremeties,
which we also think is due to vasculitis since Raynauds has been diagnosed
in his hands. He has had Bells Palsy 4 times on one side of his face and
once on the other side.
I guess I just need to know some more about the subject of MS and the
patient's feelings that go along with it. Sometimes doctors dont shoot so
straight with you about things. And like you said their knowledge can vary.
I havent read very much about it, just a pamplet or two from the doctors
office and about depression associated with it from another book. (Do you
have problems with depression also? I know depression goes along with
illness, such as lupus, but does it cause you more problems than the
physical problems at times?) You have given me more here that what I have
read in my literature. I appreciate it terribly. And Rusty does too! Thanks
again!
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!123!13!Patricia.Ferguson
Internet: Patricia.Ferguson@f13.n123.z1.fidonet.orgFrank.Whitney@f1000.n261.z1.fidonet.org (Frank Whitney) (03/20/91)
Index Number: 14080 >If you think you or someone you know has MS, you might want to pick up >"Multiple Sclerosis: A guide for patients and their families" editted by >Labe C. Scheinberg. It is one of the best books on MS. Steer clear of >older books, they paint a depressingly grim picture of life if you have MS. >There is life after a diagnosis of MS. <grin> > Excellent post. After world war two they also found a lot of the people who died and had an autopsy performed had MS type of lesions found in the brain. Many of these people didn't exhibit any signs of MS either. Of course just having the lesion in the brain didn't mean that the person definitely had MS but it also showed that many more people then were previously thought had these types of lesions in their brains. Best of luck, Frank. -- Via Opus Msg Kit v1.12 -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!261!1000!Frank.Whitney Internet: Frank.Whitney@f1000.n261.z1.fidonet.org
Frank.Whitney@f1000.n261.z1.fidonet.org (Frank Whitney) (03/20/91)
Index Number: 14081 >way they expect to be answered. eg. "How are you?" Most people only want >to hear "Fine" or "Good". If you were to tell them how you really feel, you >would stop them in their tracks. > Unfortunately, you are right on target with this message also. That's one of the misfortunes with having a disease like MS. Nobody expect the person with the disease or others with the disease or people who are constantly around someone with MS can fully understand the complications of the disease. I know that sometimes I push my wife to hard when I need things. That's probably one of the best reasons for me to keep busy at work etc so that she is able to get her proper amount of sleep. Just resting doesn't seem to be able to recharge her it has to be actual sleep. I can always tell when she's in a flare because her sleep patterns become so deep that it's almost impossible to wake her. Before we were married and she was still working, I used to call her every morning to make sure that she woke up. Sometimes she would even sleep through the phone but that was only on rare occasions and if that were the case it was better for her to stay at home anyway. Frank. -- Via Opus Msg Kit v1.12 -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!261!1000!Frank.Whitney Internet: Frank.Whitney@f1000.n261.z1.fidonet.org
Adrienne.Barhydt@p15.f41.n105.z1.fidonet.org (Adrienne Barhydt) (03/21/91)
Index Number: 14106
On Thu, Feb 21 Patricia Ferguson (1:123/13) wrote the following to Adrienne Barhydt:
AB> know I've skipped a LOT here.
PF>You actually covered it quite well for me. My husband was
PF>"tested" by way of MRI and "nothing abnormal" was the report. We
PF>really believe it is central nervous system lupus (which his
PF>sister has also) and not MS. But he believes the neurologist has
PF>not ruled MS out completely yet. It scares him terribly, has
PF>since he was young. He saw an advertisement on tv and it has
PF>stuck with him ever since.
If he saw this commercial many years ago tell him to forget it.
There is plenty to be scared of with MS. I do not mean to belittle
his fears in any way. It's just that older info (pre-1980) is
unnessarily bleak and not all that accurate. When I was diagnosed
in 1983 (almost wrote 1883, ha ha), I quickly resolved not to read
anything published before 1980. It is thorougly obsolete and 1985
woulf probably be a more reasonable cut off now.
My experience is that although they can't cure the disease, there
is a lot they can do to help a person live with it from medications
to braces (some quite simple) to physical and occupational therapy
to counselling. From my reading, I get the impression that this
was not the case before the 1980's.
PF>What sort of leg problems would be some of the more common ones
PF>at the beginning based on your observations? Rusty has some leg
PF>problems but I think it is just mainly aches and pains, such as
PF>an arthritic type pain, especially in the hips. He does have
Gait problems are common. I just started to walk weird at onset.
From weird it got steadily worse - lots of spasticity, severe foot
drop. It can make you walk like you're drunk. Clonus, a weird
jerking or shaking of the leg, is possible. Weakness is common.
Balance problems, coordination problems.
PF>nodules that come and go on his legs but we believe that to be a
PF>low level of vasculitis. I guess what scares him the most as far
PF>as symptoms go would be the vision problems. I haven't read
Black holes in your vision are a possible problem. Optic neuritis starts as
kind of a dimming in the center of your field of vision. Double vision is
common. My neuro. always gives me a color vision test; must be looking for
color blindness. Yeah, I agree with Rusty. Vision problems are scary.
PF>quite enough on the subject yet (not like the research done on
PF>lupus to this point!). He has tingling and occasional numbness
PF>in his extremeties, which we also think is due to vasculitis
PF>since Raynauds has been diagnosed in his hands. He has had Bells
PF>Palsy 4 times on one side of his face and once on the other side.
That's the thing with MS. There's such a wide variety of possible
symptoms that diagnosis is hard. But as you've learned all kinds
of diagnosis is hard.
PF>I guess I just need to know some more about the subject of MS and
PF>the patient's feelings that go along with it. Sometimes doctors
PF>dont shoot so straight with you about things. And like you said
PF>their knowledge can vary. I havent read very much about it, just
PF>a pamplet or two from the doctors office and about depression
PF>associated with it from another book. (Do you have problems with
PF>depression also? I know depression goes along with illness, such
PF>as lupus, but does it cause you more problems than the physical
Well, depression. That's another hard one to sort out with MS.
There is the depression that goes with any diagnosis of chronic
illness. But there is also the possibility of emotional and
cognitive problems as symptoms of MS. How do you sort it all out?
Here's an area where you MUST stick with very recent materials.
They are just beginnning to do some good studies that show that
these problems do exist with MS. I don't think you'll find
anything approaching a difinitive answer here.
PF>problems at times?) You have given me more here that what I have
PF>read in my literature. I appreciate it terribly. And Rusty does
PF>too! Thanks again!
You're welcome.
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!105!41.15!Adrienne.Barhydt
Internet: Adrienne.Barhydt@p15.f41.n105.z1.fidonet.orgPatricia.Ferguson@f39.n123.z1.fidonet.org (Patricia Ferguson) (03/22/91)
Index Number: 14117
JB>It can take a long time for a diagnosis.
JB>but some doctors don't seem to want to or cannot tell their
JB>patient that they have MS.
I wonder why that is? I know it is hard for a doctor to tell a patient he
has cancer or some other fatal problem. I can understand that. I can also
understand why telling them that there is no known cure for something like
MS would be hard also. But it seems to me that they would want their
patients to have enough information and understanding of their problem so
that they can create the best treatment plan for the patient, whether it is
physical treatment or mental treatment or both. I realize that it would be
hard to tell someone that they may possibly not be able to function at the
normal capacity of someone else their same age. But I really cant see
hiding it. And I like to think that the BEST therapy for ANY type of
problem tends to be laughter and positive people. Ranks right up there
with sleep/rest! Thanks!
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!123!39!Patricia.Ferguson
Internet: Patricia.Ferguson@f39.n123.z1.fidonet.orglsnider@hplred.hpl.hp.com (Lyn Snider) (03/22/91)
Index Number: 14121 Hi Gary, I wouldn't normally respond to something like this, but I just had to let you know that all medical treatment is not as bad as you have described, thank God! I too have MS. I am very lucky, very mild. I went blind in my left eye about 16 years ago. I am lucky enough to have insurance through Kaiser Permanente in N. CA. My husband rushed me to the emergency room. They sent me immediately to the Chief of Surgery of the eye clinic. He asked me about a million questions. In less than 15 min. I found myself in an elevator on my way to see a neurosurgeon. After about 1 hr. of this very special Dr. con- vincing me that I had to have a spinal tap, the actual proceedure, and the fluid being sent to the lab (downstairs) for analysis, I was given a diagnosis of MS. The whole thing took about 3 hrs. I was treated with prednisone for 3 weeks. I've never had a recurrence of that particular problem, although I've had many other problems, related, since then. I work full time, and do many other normal every day things. I do seem to get more tired lately than I used to. But everything considered, I'm in pretty good shape. The klutz of the century, maybe, but otherwise ok. I have to say too that I did have other severe symptoms for the 5 years previous to my diagnosis, and it was hinted at that I may have MS, but the Dr.s I was seeing then would not tell me what was wrong. My pre-Kaiser days. I wish the very best for you and your wife. Always keep your hopes up. Regards, Lyn
lsnider@hplred.hpl.hp.com (Lyn Snider) (03/26/91)
Index Number: 14181 Hi again, Oops, sorry about that. I confused you with another poster. You hadn't made any reference about a wife. Sorry again. Lyn
Frank.Whitney@f1000.n261.z1.fidonet.org (Frank Whitney) (04/04/91)
Index Number: 14607 >Can someone please explain MS to me? What are the beginning symptoms like >and why do they find it so hard to diagnose it initially? Is it just that >they dont want to make the diagnosis or is it really that difficult to >determine? Thanks in advance for any info! You just asked the 64 million dollar question. One of the reasons that it is so hard to diagnose initially is that it can affect people in so many different ways. With some people it will start with the eyes being affected. Many times with the eyes being the first sign of the disease the person will have less physical problems but not always. For those with physical problems occurring first it might be a sign of weakness, a numbing sensation. Most people with MS have problems with exposure to heat some have problems with the cold although that is generally less the case. I believe that in many of the cases that the doctor doesn't like to have to give bad news. This is especially true with MS since there is relatively little that can be done by the doctor in the way of treatment. I hope that gives you a little bit of an idea. I'm sure that others will be able to help you also. Frank. -- Via Opus Msg Kit v1.12 -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!261!1000!Frank.Whitney Internet: Frank.Whitney@f1000.n261.z1.fidonet.org
Frank.Whitney@f1000.n261.z1.fidonet.org (Frank Whitney) (04/04/91)
Index Number: 14609 >Can someone please explain MS to me? What are the beginning symptoms like >and why do they find it so hard to diagnose it initially? Is it just that >they dont want to make the diagnosis or is it really that difficult to >determine? Thanks in advance for any info! I forgot to mention that memory problems are now also associated with MS although you'll hardly ever find a doctor who will admit too it. I saw another message that went into the stripping of the nerve sheathing so I won't get into that but she covered many of the items that I didn't. After reading those messages you should see why the disease is such a pain. Speaking of pain you might also encounter phantom pain. Good luck. Frank. -- Via Opus Msg Kit v1.12 -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!261!1000!Frank.Whitney Internet: Frank.Whitney@f1000.n261.z1.fidonet.org
Gary.Bewell@f424.n104.z1.fidonet.org (Gary Bewell) (04/04/91)
Index Number: 14610
On 17 Feb 91, you wrote to All
PF> Can someone please explain MS to me? What are the
PF> beginning symptoms like and why do they find it so hard to
PF> diagnose it initially? Is it just that they dont want to
PF> make the diagnosis or is it really that difficult to
PF> determine?
Hi Patricia,
MS is a disease that attacks the central nervous system. That's
the nerves of the spine and brain. The protective covering on the
nerves hardens and breaks off. This is something like what happens
with an old electrical cord. You know how the plastic becomes
brittle and falls off. After this sometimes the cord shorts out
while other times it's okay. (MS is something like this, although
more often the hardened insulating material prevents electrical
impulses from getting through.)
There aren't any typical beginning symptoms. The first symptom
that I recall as being a common MS symptom was going 98% blind in
one eye. With prednisone I was able to reverse this to 98% vision
in the eye. Other common symptoms are abnormal fatigue, numbness,
tingly-ness, weakness, tremor, spasticity, blurred vision, urinary
problems.
It's hard to diagnose for several reasons. The doctors want to see
signs, not symptoms. A sign being something that is observable. I
can't remember how many signs they want to see, but it is something
like 4 or 5. Most people with MS live with a rollercoaster-like
life of flare-ups. I've found that if I'm experiencing a flare-up
and make an appointment to see a specialist, the 6-week wait for
the appointment is too long. By that time I'm in a remission. The
symptom has calmed down. To short-circuit the long wait you have
to have a very serious flare-up or an 'exotic' symptom. The main
categories of MS (I'm using main because I might have forgotten one
or two) are possible, probable and definite MS.
For me my eye specialist sent a letter to my family doctor saying
that I probably had MS in 1973. The medical profession ignored
this. It took from 1976 to 1981 to get a probable diagnosis. I
visited 29 specialists and had over 250 appointments. My definite
diagnosis came in 1985. I haven't been able to work since 1979.
(The definite diagnosis hasn't been accepted here because the
neurologists here didn't see the 'rare' type of seizure that I had
in Ontario. The seizure was videotaped. I was examined before and
after the seizure. After the seizure I showed more traditional
signs of MS.) Politics enters into the diagnosis as does a
misguided idea that the patient can't handle being told they have
MS. I suspect that if a study was done, the results would be that
most of us are relieved to finally have a label for our disease.
Beginning symptoms. There isn't a foolproof set of symptoms. Most
of the time we write off symptoms. I'm just having an off day. I
remember having problems with my wrists back in 1967. They seemed
to tire very easily. In 1970/1 I remember going through periods
where I could not get up I was so exhausted after doing nothing.
In 1974 I remember having foot drop when I was running. The foot
started to flap after I started running. I began wearing boots to
provide ankle support. I hope this gives you an idea of how
difficult it is to pin down early symptoms.
As an aside, nowadays more cases of MS are being diagnosed through
computerized 'x-rays' called MRI (magnetic resonance imaging).
These have a 90% reliability--not very good for nerves involved in
vision or in the brainstem. There are also a lot of diagnoses of
MS being made after a person dies. During autopsies doctors are
discovering people who didn't even know that they had MS.
I don't know if you have heard about the bell curve. It's used
used in statistics. Basically things like intelligence and also MS
follow the shape of a bell. At the outside edges there are very
few people. The majority are towards the centre. For MS on one
outer edges are those who have very little impairment and on the
other edge are those who are severely impaired and confined to a
hospital bed. The majority of us fall between these extremes.
If you think you or someone you know has MS, you might want to pick
up "Multiple Sclerosis: A guide for patients and their families"
editted by Labe C. Scheinberg. It is one of the best books on MS.
Steer clear of older books, they paint a depressingly grim picture
of life if you have MS. There is life after a diagnosis of MS.
<grin>
Gary
# Origin: Total Perspective Vortex,Calgary,AB (MetroNet 201:5500/198)
To respond netmail, use FSC-0038 DOMAIN lines or as 1st line of msg use:
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!104!424!Gary.Bewell
Internet: Gary.Bewell@f424.n104.z1.fidonet.orgBob.Yankun@p0.f460.n101.z1.fidonet.org (Bob Yankun) (04/16/91)
Index Number: 14950
hi bonnie.i don't really kmow how i'm coping with it ,how do i tell? i
feel fine about it except for the fact i can't talk because of it.the
few times a month i do get out, to go shopping, people just look and i
guess wonder as to what kind of an accident i had. i look completly "
normal " . and that's probably the hardest thing i have to deal with.
who wants to talk with someone who sounds like a "baboon" . i don't
drive anymore so getting out is something i can only dream about.it is
impossible to make friends except by way of this computer and being only
41 means i am not eligible for any kind of assistance in getting around.
i don't use a wheelchair (yet) and hope i never need to.i can still walk
about 100' with the aid of my cane,but i am always so,so dizzy i don't
dare try and go much farther.i hope that this answers your question
about coping i am fine
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!101!460.0!Bob.Yankun
Internet: Bob.Yankun@p0.f460.n101.z1.fidonet.orgJim.Sherwin@f21.n272.z1.fidonet.org (Jim Sherwin) (04/16/91)
Index Number: 14960
Thanks Frank,
Admittedly the, "fatigue factor" grabs all persons regardless of
one's physical condition. The "key" to avoiding or getting free from
the "fatigue factor" is to realize it's mostly a mental hang-up. I
find it horrendous that teenagers in the prime of life commit suicide
because they don't feel loved, significant or any of the myriad of
reasons! If only there was some way to convince people that life is
only as "difficult" as they perceive it. The old saying, "I thought my
life was bad because I lost a finger until I met a man with no arm"
kind of sends the message. Seeing is better. I can't begin to number
the times people say, "Your my inspiration," or "when I feel down I
think of you and realize life isn't so bad." I don't think of myself
as "inspirational." I've made up my mind to enjoy the gift of life
while I have it. The "fatigue factor" choaks the enjoyment so I shun
that "poor me" crap. I know I'm ramballing on a bit, sorry. I think
you can identify with what I'm saying.
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!272!21!Jim.Sherwin
Internet: Jim.Sherwin@f21.n272.z1.fidonet.orgJean-pierre.Beland@f223.n163.z1.fidonet.org (Jean-pierre Beland) (04/16/91)
Index Number: 14961
Hi! Bob, I am 50 and became a grandfather last year.
My major problems of functionning started in the fall of 1984.
Since you are not able to talk, have you thought about learning sign language?
It might be useful to join a group that supports those that cannot speak. Have you joined your local MS group?
I meet with other persons with disabilities and have found it useful.
Other people with MS can be helpful in giving you tricks in coping as they have had the experience that you are going through.
I belong to a group that meets for leisure acitivities and enjoy it.
I don't have to worry about how I look or I how walk, as the others are in the same boat as I am, and no one asks questions about my condition.
It allows me to go out once a week and have some fun during the day.
cheers, J.P.
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!163!223!Jean-pierre.Beland
Internet: Jean-pierre.Beland@f223.n163.z1.fidonet.orgBonnie.Snyder@f13.n128.z1.fidonet.org (Bonnie Snyder) (04/16/91)
Index Number: 14962
Two things come immediately to mind in response to your message, Bob.
First, get on the computer and do as much messaging as you can. It's a
good way to meet people and 'socialize' in a way. The anticipation of
responses to your messages should help give you some positive "vibes" in
your outlook. Second, there should be some kind of support group that
you could attend to help you find out how others in your situation are
coping. Perhaps your doctor, or someone in the medical community can
not only point you in the direction of a support group, but could assist
in finding you transportation to attend meetings.
On a lighter note, please share with me some of your interests and
hobbies and maybe we have some in common, or we can learn about
something new from each other.
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!128!13!Bonnie.Snyder
Internet: Bonnie.Snyder@f13.n128.z1.fidonet.orgFrank.Whitney@p0.f1000.n261.z1.fidonet.org (Frank Whitney) (04/16/91)
Index Number: 14984 >Thanks Frank, > Admittedly the, "fatigue factor" grabs all persons regardless of >one's physical condition. The "key" to avoiding or getting free from >the "fatigue factor" is to realize it's mostly a mental hang-up. I I'm sorry but I can't agree with you on it being mostly a mental hangup at least with MS. I've seen my wife Jeanne try her hardest to do something and when she gets fatigued you could place a million dollars in front of her and she wouldn't be able to pick it up. We can always tell when it's depression or MS because with the MS when she first awakens she feels great unless she is in a flare. When she is depressed then she is fatigued almost all of the time. >find it horrendous that teenagers in the prime of life commit suicide >because they don't feel loved, significant or any of the myriad of >reasons! If only there was some way to convince people that life is Yes, that is a real tragedy when someone in the prime of their life decides that it is no longer worth living. >as "inspirational." I've made up my mind to enjoy the gift of life >while I have it. The "fatigue factor" choaks the enjoyment so I shun >that "poor me" crap. I know I'm ramballing on a bit, sorry. I think >you can identify with what I'm saying. Well, that has been said to me many times that I'm an inspiration to someone. I generally thank them but say well what else do you expect me to do. I've never been one to wallow in self pity and I'm not about to start now. I enjoy my life to the fullest that I can and not much slows me down. I'm fortunate in that I don't have a real fatigue problem like my wife with her MS. Best of luck, Frank. -- Via Opus Msg Kit v1.12 -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!261!1000.0!Frank.Whitney Internet: Frank.Whitney@p0.f1000.n261.z1.fidonet.org