Hi everyone, I have had MS for about 20 years now, but this is the 1st time I have joined a forum or even looked at any of them, I think it was denial. I have been pretty lucky up until now with minor syptoms.
For at least the last month I have had tingling/burning and the feeling of heavyness in my right arm, he started in my wrist and has not moved to my shoulder, Im not really sleeping at night as that is when it is at its worse. In the last week or so it have moved into my right leg as well as lower back pain. Having real issues focusing when trying to read things.
My problems is that Im getting no where with my doctor, I have been to him twice in the last week, hes done blood test and I feel hes not listening, he tryed telling me its not my MS it capall Tunnell in my wrist, but cant seem to understand its my right side.
I am now waiting for him to decide weather he will send me to my neuo or to a specialist to look at my wrist. I know my body and know what is happening and after reading posts about syptoms on here yeaterday its like im reading about myself.
Does anyone else having the same issue or have advise. Sorry about the rant had alot to get out even time i think about it I want to cry!
You seem to have the opposite problem to most people – a GP who is saying its not MS.; usually it’s the other way round!
Do you have a consultant neurologist? If you were dx 20 years ago and have had relatively mild symptoms its probable that you havn’t seen anyone since dx. I went over a decade without seeing a consultant and only did so again at the instance of my GP.
Perhaps it’s time to get back on the hospital’s books. Rather than wait for your GP to decide to perhaps send you to someone about your wrist insist on going back to a neurologist. If THEY decide it’s muscular skeletal rather than MS related nerve pain they will refer you. It has been my experience that consultant referrals are faster than GP ones so it probably won’t waist any time. On the other hand if the neuro thinks its MS he can start you on some medication for the pain.
Put yourself in the driving seat on this one – you need further help but I think you need to insist on your MS being ruled out by a specialist before you start on anything else.
Tingling/burning and worse at night describes my carpal tunnel syndrome but heaviness doesn’t. And, of course, carpal tunnel syndrome can’t affect the legs, it only affects the hand and arm. Your description doesn’t sound like CTS to me, not with your leg being affected (I have very mild CTS and I had a flare-up the week before last, the first in over 5 years).
Is there another GP at your practice you can speak to? One who might be a bit more prepared to listen to you! I agree with Jane, you need to insist on your MS being ruled out before any other referrals or investigations happen.
Rachel I notice your location is New Zealand? perhaps the system for people with M.S is different where you are, here when diagnosed we are referred to an M.S nurse specialist. We can then get in touch with her/him as, when and if we need to. I agree with the previous responses, you need to be referred back to a specialist. Good luck hope you get some support from the medics soon. Jan
That is good news. It seems to happen rather often that undiagnosed people with MS-related arm and hand problems are misdiagnosed with carpal tunnel - there have been people on here who have even had surgery. There is rather less excuse when a person is already dx with MS…(unless your GP is right, of course, but it doesn’t sound very likely, does it?) Ah well. I am glad that you have got your referral and I am sorry that your MS seems to be making its presence felt. It is a sinking feeling, when MS that has been quiet starts to rumble about a bit. I hope that things settle down for you soon.