Gary.Bewell@f34.n129.z1.fidonet.org (Gary Bewell) (10/30/90)
Index Number: 11363 Hi Aaron, Like you I have M.S. My reaction to your message is to say 'Dump the neurologists'. I've had my share of 'non-MS' MS symptoms. What I mean by that is that my signs and symptoms do not fall into the classic description of MS. As an example, my chronic pain is now treated as an MS symptom, but it took more than five years before the neurologists would accept this. I've also had tonic spasms. These are like having a charlie-horse in every skeletal muscle on the right side of my body. When this occurred, I was in a different city near one of the biggest and best MS clinics in Canada. I went in and I was videotaped having one of these seizures. The result was a definite diagnosis of MS (finally after 12 years). When I returned here and told a neurologist about the diagnosis, he said "I beg to differ with my colleagues in London, but you don't have MS." All I'm getting at is that you will experience a lot of bizarre symptoms with this disease, and that neurologists will make you feel like you are going crazy. Just take their comments for what they are worth, nothing. Neurology is the most archaic area in medicine. To the best of my knowledge, there aren't any cures for any neurological disorder. The neurologist may be able to provide you with symptomatic relief, but that is about all. Here it takes an average of 6 weeks to get in to see a neurologist. For me at least, the symptoms usually subside before I get into see him or her. Ten years ago, I saw a psychiatrist who dealt with pain problems. He gave me some words of wisdom for dealing with a chronic disorder (which he was sure was MS). He told me to find a GP who I could talk to. The GP should be able to prescribe the same treatments that I would receive from a neurologist and I would get in a lot quicker. The GP should also be able to get me into a neurologist quicker if necessary. From personal experience, I have a better outlook on life when I don't have dealings with neurologists who have labelled me hysterical, a hypochondriac, depressed, etc. Just a few words of advise. I don't know if you know that muscles start to deteriorate after a few days of disuse. To maintain your muscles, you will have to find out how much activity is enough and how much is too much. You have to try to walk this fine line. In 1979, I stopped working. I was told by my pension board that I had to stay at home. Not knowing what was happening to my body, I did just that. Within 6 months, I couldn't even walk across the street. It took me 3 years to regain what I lost in those 6 months. I hope you don't fall into the same trap. Talk to you later. Gary # Origin: T.P.V. - Calgary, Alberta, Canada (8:7500/198) -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!129!34!Gary.Bewell Internet: Gary.Bewell@f34.n129.z1.fidonet.org
Aaron.Feldman@f204.n260.z1.fidonet.org (Aaron Feldman) (11/02/90)
Index Number: 11449 Gary, I want to thank you whole heartedly for your reply it was very insightful and relevant. I was seeing my GP (who died) and now I feel like I am between the "devil and the dark blue sea" (something like that). The GP I see says he can't perscribe or tell me anything about MS and the neurolgist doesn't wish to be bothered with minor symptoms especially since I have no insurance and it takes me 4 months to pay his bill. There is a clinic that I am going to look into I also have decided that it might not be a bad idea to go back into counseling. I wish I could see a male this time though. There are issues of impotence and power that are important and that I think woman are more tolerant of and therefore tend to minimize them. Anyway so far I have had no symptom relief and you are certainly correct about muscles. (I wish you could tell me more becos I don't understand the physcial dynamics). However, since one leg is almost completely numb I have been using the other to ambulate and now am starting to have terrible muscle spasms and pains. I don't know , at least for myself at this point, how to determine the correct amount of movement. I keep pushin although it has been harder as of late for my equilibrium of *off*. I am so dizzy. Been taking antivert but that doens't do it. Of all these little nasty symptoms it is the one that bothers me the most. Dizziness can reander me helpless and that scare me. pls keep in touch, Aaron -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!260!204!Aaron.Feldman Internet: Aaron.Feldman@f204.n260.z1.fidonet.org
Adrienne.Barhydt@p15.f41.n105.z1.fidonet.org (Adrienne Barhydt) (11/05/90)
Index Number: 11520
In a message of <Oct 28 20:41>, Aaron Feldman (1:260/204) writes:
AF>therefore tend to minimize them. Anyway so far I have had no symptom
AF>relief and you are certainly correct about muscles. (I wish you could
AF>tell me more becos I don't understand the physcial dynamics). However,
AF>since one leg is almost completely numb I have been using the other to
AF>ambulate and now am starting to have terrible muscle spasms and pains. I
AF>don't know , at least for myself at this point, how to determine the
AF>correct amount of movement. I keep pushin although it has been harder as
AF>of late for my equilibrium of *off*. I am so dizzy. Been taking antivert
AF>but that doens't do it. Of all these little nasty symptoms it is the one
AF>that bothers me the most. Dizziness can reander me helpless and that
AF>scare me. pls keep in touch, Aaron
Aaron,
Stretching and range of motion exercises are very important but they must be
GENTLE. My stretching routine is my number one priority every day. If I have
only enough energy to brush my teeth or stretch, I choose stretching. I
believe it would help you a lot to see a physical therapist to work up a
routine for you, so that you will stretch the muscles that you need to stretch
in the way that is right for you. I'm sure it is easy to do damage if you
don't learn how to do it right. I know - it costs bucks. I wish it didn't.
Doctors can't cure us but things like physical therapy can keep us functioning
lots better.
If you can work out a way to see a PT, try to find one who has worked with
people with MS before. They must understand your energy limitations to be
helpful. Perhaps your local MS Society office would have some referrals or
maybe someone else in your area that has MS would have some ideas.
As far as muscle spasms go, the stretching might help some. I seem to also be
seeing a pattern in myself where if I overdo things physically ( and it
doesn't take much!) the spasms get worse. I am trying to learn to rest before
I get tired to avoid the spasms. (I think of this as trying to learn an
advanced technique; I need some work in that area yet!)
I hope this helps some.
Adrienne
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