Forum

Shock to the System

Hi All

I recently had a Neuro appointment due to a couple of minor “episodes”. He detected a slight tremor in my left hand (I have been having sensitive skin feelings down the side of my left hand, left buttock and left foot) and has asked me to consider DMD’s. He has recommended Avonex.

I have always been quite proud of the fact that I have coped without medication and hadnt really considered my new “episode” to be all that major. The big shock though was the fact that I had somehow, in my head, always considered the cat that I may become disabled later on in life (I am 39) and had come to terms with the whole wheelchair issue, even cracking jokes about it. What I had NEVER considered was the possibility of my hands being affected. This would be far more disabling for me and it has really knocked me for six.

I dont relish the thought of being on long-term medication, but dont feel I am able to make that decision the way I feel about it all at the moment.

Not really sure what my question is - just feel better putting it in writing I suppose. I have always been a bit blase about the disease previously, but am now having to face possibilities I had never considered before - Feelig a bit down and confused.

Rachel x

hello rachel.

i don’t really feel equipped to advise you on this as don’t know enough about ms/treatments at the moment. what i would say is try not to start thinking the worst as it may never happen. do you have an ms nurse that you can talk things over with? i have tremors in my hands/loss of sensation/numbness, but having had those symptoms for the last 5 months they haven’t got any worse and i am still able to carry on as normal.

wishing you all the best for the future xxx

Thanks Vicky

I think it was more the fact that I had only ever considered losing the use of my legs - not hands. Really strange how the mind works isnt it? I think its just because we see being disabled as a visible thing - ie., wheelchairs and not the other little things that go on behind the scenes. I cant imagine struggling with my hands - I am a secretary, very proud of my 102wpm and to consider my hands being useless just doesnt bear thinking about. Which is probably whey I havent previously thought about it. LOL. Just as I quickly “got over” my diagnosis a few years ago, I am sure that I will get over this thought also.

Hi I was only dx myself in June 12. Before that I had a couple of episodes of ‘trapped nerves’. However in march I lost the use of my right had completely, couldn’t even press a keyboard button! Very bizarre. It took seven months before my hand writing returned to a recognisable level. The thing with considering DMD’s is that, as far as I understand, they can reduce the severity of any future relapses. Having had the sudden shock of my right hand and arm, the decision for me to go onto DMD’s was easy. Anything to try prevent it being so severe again. It is a personal decision but do look on the msdecision website which is great for giving info on the different DMD’s. it took me ages to decide which one I wanted to try but this did help me. Mish x

Hi, I was diagnosed in 2005 with severe mobility problems and bladder control. I started on Avonex about six motns later and continued with it until January this year when I had to come off it because my neuro said it wasn’t doing me anymore good as my ms had worsened significantly and is now SPMS. I now have problems with my hands and gripping things. Starting DMDs is a personal thing and only you can make that decision but I think it probably held things off for me for a while during that time. Good luck whatever you decide. Anne x.

There is another way of looking at the problem, Rachel.

Each relapse hits your body and the body does not quite recover when the relapse is over. You can think of it like a staircase where the length of the step and the hight of the step are both variable. But if you are at the top, the stairs always go down.
What a DMD does is to reduce the average severity of a relapse (the step is not so deep), and reduce the average number of relapses (the steps get a lot longer). This could mean that it will be a lot longer before you reach the wheelchair stage.

I just wish I had started the one I chose when I was first told that I qualifed (instead of waiting for six months). I would probably have saved myself two (or more) relapses (and mine have never been particularly severe), but I could well be walking with only one stick, and not losing my balance regularly. Hindsight is a wonderful thing)

Geoff

Wow! Thank you everybody and Doctor Geoff - thank you - that is most definitely very helpful. My train of thought was definitely leaning towards not wanting to get a couple of years down the line and wishing I had given it a go. From what i can gather, there are no disadvantages to taking the DMD’s - the worst that can happen appears to be that they just dont work for me.

I have made an appointment to see my GP next week to discuss with him as he knows me far better than the MS team and am compiling a list of questions as I think of them, but am leaning far more towards giving it a go than I was previously.

Thank you to everybody. xx