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@JasFromTas 

Last reply

JasFromTas

Wobbly Wonky Walking and recovery time?

Hello everyone. Am currently recovering from my 6th relapse in 2 years. I got out of hospital about a week ago (after 4 weeks... home bed is sooooo nice!), and am now at home, managing (with services / help), but really really over it. I am still using crutches (elbow crutches) to get around. Sometimes 1+/- furniture, sometimes 2. Balance and ataxic issues. It has been 5 weeks now - how long do we all think it takes? Most of my recoveries have been in about 4-6 weeks (I spent 3 weeks in hospital before - but never used any mobility aids, and still managed to get back to work 6 weeks after it started. There is no way I will be back at work (as a nurse) in a week. Snort! I am having some days which are better then others now, and then some days which are bad again. The 'general trend' upwards has really slowed down compared to 3-4 weeks ago. :-( What is everyone's thoughts? I know IV methpred can stay in the system (via blood tests) for 7-9 weeks, but in terms of recovery what are peoples experiences? Feeling 64/10 frustrated. And 0.64/10 patient. Coincidence? I think not... I have started the process of getting hand controls on my car (a process that takes 5 months according to my OT). I have numb feet even before this latest relapse so I don't think I'm jumping the gun with this. I would HATE to cause an accident, especially if someone else was hurt. And I have had driving restrictions for sometime (leg related). Do you think I am being too soon with this? I am not trying to be morose, but thinks have not been going 'well' for me and MS. Seems like an early thing to do given that I only had diagnosis in October 2012. But am sick of not having a life. Am off work without pay. They are being good about it, holding my job and an educator has recently retired, so they are re-writing her position description and hoping to get it through HR so that I can do it even if I am still on crutches (1-2). This will take a few weeks, but it is the best return to work plan I have at the moment. Anxiety +++ I have another neuro appointment on Tuesday. He has talked about Campath quite a bit. I am sure he will bring it up again, but I am not so keen on it (side effects pretty high). Anyone here with experience??? Blast about not having miracle remylination. Hmm :-(
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@Stumbler
@Stumbler
 

Jas, there's overcoming the relapse and then there's teaching your body how to do things again. So, hopefully the relapse is over and you're now down to rehabilitation. Keep at it and work with your physio. As for hand controls, treat this as a means to en end. They seem a sensible way forward if you're starting to lose confidence in your feet. My car is an either/or hand controls. I can use the hand controls, yet the pedals still work. You've already highlighted safety as the main concern and that's the right priority. As for Campath/alemtuzumab/Lemtrada, if it wasn't any good, then the manufacturers wouldn't have pulled the product to re-license it as an MS medication. However, I only personally know of one person in the UK, who was on the Campath trial.

@vasy
@vasy
 

I know a guy who took a part in the Campath clinical trial (CARE-MS-II) three years ago, after he have failed Rebif. He doing pretty well now, no relapses since first dosage, even got some improvements over his deficits. The only issue is that he have to do blood and renal tests monthly to catch and treat side effects early if any would appear. I’m also on Lemtrada (outside of the study), but received first course only two months ago, so it's very early to say if there is any effect.