My relapse will not go away

[NickyOz]

I have had MS for 10 years and been relatively OK. A bit wobbly and balance problems but nothing serious. I had a relapse 3 months ago that left me unable to stand, shower etc. I can somewhat walk now but not very well at all. Really unstable and having some real bad falls. I am starting to think this is my new baseline. I have so much accepting to do if that is the case as overnight I have gone from midly affected to severly disabled. Too much for my brain to process. My neurologist says my MS is so active I have no choice but to go on Ty - something I thought I would never have to do. Has anyone else been through something similar. Please respond as I am desperate to hear other views, stories or advice

[BigA]

Nicky,

you've got a tough decision. My questions are - you've had 2 relapses in 10 years. Is that active, or was the last one just a giant relapse?

Also, how "active" is the disease still? Can he say? Wouldn't an MRI show if it were still active? Are you seeing an MS specialist? I've heard Ireland doesn't have much in the way of support. Any doctor can simply prescribe the strongest medicine.

You know that as time goes by, you may recover to a larger extent, but it is unknown. Even 1 year later. But you're also dealing with a loss of muscle if you have not been active, so if you can exercise, that will be good.

Finally, one of your countrymen, a doctor with MS runs an excellent website and has written a book. I recommend you check it out. Also, there are many people who have been unable to walk and have walked again.

http://www.overcomingmultiplesclerosis.org/.

Good Luck

A

[rdmc]

Sorry to hear of your worsening symptoms. Have they done an MRI? You said the neuro wants to put you on Tysabri...were you on another med up until now?

Since your mobility and balance have been severely affected, maybe an evaluation by a PT might be in order. I go to a PT who has helped me with my balance.

Don't assume,just yet that this is your new baseline...I think the "official" time to assume that a new symptom is going to hang on permanently is longer than 3months.

Hang in there!

[Thinkimjob]

Have you had a course of steroids?
I had a flare that lasted four months this year - your symptoms almost exactly - and I thought that was it. I was on steroids for five weeks, on, off, then back on.
Two months on, and everything has quietened down again, thankfully.
Still limp, still wobbly, but not as badly, and I'm not so tired.
One day, 'they' will find out what starts a flare. You really do feel sick for the duration. If you didn't know it was MS, you'd swear you had caught something pretty awful.
Good luck.

[babygirl_vic]

Sorry you're having a flare!! I had something similar happen to me last year and I was hospitalized and they ruled it TM. I couldn't walk at all, and I was in hospital for a week, MEGA dose of steriods and then came home on steriods for several weeks.

My recovery was LONG & HARD!! At the time of this flare, I was working full time, taking a full load at college and being a mother of 2 boys and a wife. I'm sure stress had nothing to do with it!! LOL But I came home on a walker and I gratuated to a quad cane in about a month and now I only have to use the cane during flares and on the "BAD" days.

Don't lose hope!! Just remember that GOD choose us "Strong" beings to have this disease, because the weak couldn't handle it!!

I know what you're dealing with Sucks right now, but it could get better with time!! Patience is the key!!

[NickyOz]

Thanks for all your advice. Sometimes you feel so alone cause no one can really go through exactly the same journey. I go to the MS neurologist at the hospital and they very good. I got an MRI and the lesions were big and active (what does that mean). I went to a physio but found them useless and exercises to simple for me. I swim 60 laps 3 times a week and I think that is better than physio. . When do you get to a point when you know the relapse won't improv e. It was stress that caused my relapse. Went through really stressful situation at work for 6 months and 3 days after it was over I had the relapse

[Temagami]

Hmm, I´m starting to wonder if the relapses "wait" til the stress has just passed and then wham, it hits. My first round of this hit while on vacation- just after a stressful round of writing report cards and ending a term. So, wondering if the experience is that the stress sets up the relapse and then, once our guard is done, it hits.

[Anthea]

Hi,

did you get any steroids? When I've had my last giant relapse, I've got 3x500 mg. And still it needed nearly 4 months until all symptoms were gone.

This time I've got 3x1000 mg + approx. 500 mg as pills the days before and after the shots. So far no recovery from the relapse (6 weeks now).

Greets,
Karin

[NickyOz]

I got 3 days of pretty strong IV steroids just after it happened. Comforting to know some relapses have `lasted 4 monrhs. There is still hope for me. I also had the relapse while on holidays. We were getting on the plane and this ease against me was over. It really stressed me as I could have lost my job. Been there 12 years and love it. Never been through anything like that. I told my brain I could finally relax. Any ability to stand just left me and it was the worst holiday of my life. Gor ro see the really scarey side of MS for the first time but did not know what was happening. I was so scared

[Anthea]

I was so scared

Understandable. Do you know how much steroids you got? Here it is normal to give some more iv's if the first portions are not enough. But I decided for myself that the side effects of the steroids were to worse this time to take another round. This relapse will vanish with time and patience. I can walk, I'm just very very slow and can't walk very far at the moment. But this will pass. And if not, I will manage it too.

Greets,
Karin

[NickyOz]

Not sure how much steroids but they asked me if i wanted an extra 2 days even though they did not think
it would do a whole lot more than the 3 doses - so I said no. I look like a real drunk when I walk.

[Thinkimjob]

I always look like a drunk when I walk! And not a very perky drunk, either.
I have been properly drunk on occasion in my youth, and I think I looked more sober back then.
I think you're right, Temagami. You get through the stressful stuff somehow or other, and as soon as you get a chance to enjoy yourself and relax, BAM, flare city.
It's a terrific disease, this one, isn't it.

[NickyOz]

Someone said that the support for MS here in Ireland is not good but I have found it quite good and pretty much everything is free. What is Aus like in regard to MS care. I have not been home in 12 years but I know that generally Aus is streets ahead of loads of stuff in particular state costs and ill health. Do you find the weather works against your medicatin. Pretty hot where you live. Irish climate although s*** is very suitable for an MS condition

[Lendi]

Nicky, I wantd to address the Ty situation with you.

I started to go downhill although not nearly as badly or as quickly as you have. My neuro put me on ty (plus I had a really hard time with the shots) saying that it was the best and he was concerned that if we didnt' get my MS in check I'd wind up with a much worse situation. Just a thought about why you might consider going on it.

Sometimes flairs last for many months but the people still end up doing better eventually. I wish that for you.

I hope you feel better very quickly and I'm so sorry you're dealing with so much.

[NickyOz]

I keep asking this question but not getting an answer I understand
1) Are CRABS medications immunosuppressants and if so are you not have meant to have gone on immunosuppressant if on Ty
2) If Ty only safe to go on for 2 years what is the point of going on an MS medication for such a short time when it should be a long term decision