Uncharted Issues after 8 relapses

[tami122]

It's been a really long time since I have posted anything on this site but I really need some advice. Ok, after 7 relapses I normally start to get relief from my symptoms during my actual IV steriod treatments. This being my 8th relapse in 4 1/2 years. This time I underwent 2 rounds of 5 day IV steriod treatments with a 6 day oral tapper after each one. It's now been 3 weeks since, my last round of IV steriods and I'm not feeling much relief at all from this relapse. I'm experiencing intense and extremely painful spastity in my legs and back along with dizzy spells from my optic nerve in my left eye. Has this happened to anyone else before and what happened? I hate to even think this way or dare say it out loud, is it possible my MS is going Progessive?

Additionally, my white cell count has been extremely high for about 4 months now and I have lost a lot of weight (30 pounds). I have been unable to put any weight back on. My dr's have been running tons of blood work with no answers as to what could be happening. Any suggestions on what I should have my dr's look for?

Please let me know if any of you have experienced anything like this before in either situation. I know the steriods can take up to 3 months to take full effect but this is extremely unusal for me. Thank you for any suggestions or stories that can compair to what I'm experiencing now!

[earnellzwifey]

Wow tami122,

Sorry to hear your in such a battle. I am in a flare also right now and I did 2 weeks of oral steroids. I was feeling better while on them but soon after I stopped my sx returned with some new ones.

I have only had relapses in 5 yrs but this one is the worst. It has been since the beginning of april and still getting worse. I don't the answers you are looking for but I can relate to relentless fight with the sx.

Hope you start to feel better soon ((((hugs))))

[BigA]

I worry about mine being progressive - I guess we all do. But I think having exacerbations means you're not progressive. You're worried about not seeing the "remit" part, but you have not given it enough time. It could take 6 months. But after 8 exacerbations, you may be stuck with stuff too.

It can take months for exacerbations to clear, even after steroids. Are you getting bed rest? Some people stay in bed for months.

I don't know if 4 relapses in 8 years is an extraordinary amount or not, but you should ask if you're on the right medication.

The weightloss is an issue. Do you have a GP and a neurologist? Maybe you should bring your results to a fresh doctor and see what he or she thinks. There may be tests to do which they don't want to do yet, but should.


Good luck.

[0485c10]

No it does not mean that it has gone progressive, it may mean that steroids are not working as efficiently in you.

I didn't say it does not mean you have not gone progressive, response to steroids does not mean progressive.Its a side subject.

I am in late stage of RR, not progressive yet. When I was diagnosed I was so frightened I would not respond to steroid and that would mean I am progressive? But I'm kind of learning the nuance of the subject.

Transition...kind of a combination of both for a while.

RR-> worsening RR ->SP with Relapses -> SP with relapses no longer present.

I think people say it does not respond to steroids as a easy way of saying it does not improve..response to steroids means nothing for whether it is progressive or not.....it just means response to steroids--which becomes less after a person has used the a few times.

In my first 3 steroids I had improvement with in days, on my 4th I did not improve for a month & then not completely. Its still RR, not progressive because I did improve--progressive doesn't improve at all. It is late stage RR because I had a greater incomplete recovery from the relapse than before, but I had some recovery after waiting a month for it.

My doc said conversion to progressive is not like an on-off switch, its more gradual. Greater incomplete recoveries for a while until no recovery,. She said I'm in that twilight zone, but still RR. A little of both for a while and headed toward progressive

[BigA]

I'm curious: My first (probably 2nd) exacerbation didnt' have a complete recovery. I have residual Spasticity and odd sensations/numbness/tingling.

How complete were your first exacerbations? Are they ever really "complete"? Did you have no residual deficits? Anyone else?

Thanks,

[tami122]

I'm curious: My first (probably 2nd) exacerbation didnt' have a complete recovery. I have residual Spasticity and odd sensations/numbness/tingling.

How complete were your first exacerbations? Are they ever really "complete"? Did you have no residual deficits? Anyone else?

Thanks,

In all 7 of my past relapses I had a full recovery. This is the first relapse that 2 rounds of IV didn't do anything at all. My neuro and the head of MS at the University of Penn clinic both say it takes 3 months to get the full effect of the IV steriods. So, at this point I'm in a waiting period. I have a feeling that this time I'm not going to be so lucky! They say that it all depends on the damage done during the exacerbation!!! Good luck, I really hope you feel better!

[Jenny3838]

My 1st probably second too, if you count what happened to me 11 years ago after a tetanus shot completely resolved. It was mild double vision. I have no residual deficits.

I'm curious: My first (probably 2nd) exacerbation didnt' have a complete recovery. I have residual Spasticity and odd sensations/numbness/tingling.

How complete were your first exacerbations? Are they ever really "complete"? Did you have no residual deficits? Anyone else?

Thanks,