Question about Relapses

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Question about Relapses

Postby NAUAuntie » Fri Jan 23, 2004 1:06 pm

I have a question about relapsing - don't know if what I experience is "normal" or not.
I was dxd in April 2003, and began Rebif in June. I am 40, female, and overweight.
Anyway, I have what I think are "relapses" - in April, just after my dx, I had a new "episode" in which my entire body went numb, with extreme pain in my hands and feet and partial paralysis in some of my thigh and abdomen muscles. This episode was treated with Decadron IV - 4 series of 3 days of 150mgs for the last three. At the end of this episode, my only lingering effect is that my hands never got better - they hurt always, always tingling, cramping often, and no tactile feeling in the skin (everything feels like I am touching shards of ground glass).
So...I have learned to live with this hand thing, and rely heavily on Dragon NatSpeak. My question, though, is that I periodically - sometimes weekly or more or less - experience pain in my arms and legs, like the ache you feel when you have the flu, and somedays I feel a return of the numbness in my body, but never all over like it was in April.
Are these pains and numbness spells relapses, or are the "normal" course work for MS? I have had no new "episodes", so am I in "remission"? Are these new "episodes" or what?
My doctor just keeps saying not to worry, but when I read that people are "relapsing" or having a new "episode", I guess I just need a definition (real life) of these terms.
Thanks for listening - sorry to be a "pain"!
Hugs
Auntie Jane
*Courage is the power to let go of the familiar*
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psudoexacerbations?

Postby triara » Sun Oct 01, 2006 6:38 am

I recently read about an MS phenomenon in Inside MS, the MS society magazine. If you are stressed, overheated, have a virus or other trigger, you can have pseudoexacerbations. Usually 24h or less in duration. Then they clear. They talked about people sunbathing at the beach and finding that when they got up, that they couldn't. They had to be carried to the car. It happens to a lot of folks. Cool them off and its all better. OVerwork, emotional upsets etc were all listed as triggers.

The article is at
http://www.nationalmssociety.org/IMSJul ... kOrNot.asp
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psudoexacerbations?

Postby triara » Sun Oct 01, 2006 6:43 am

I recently read about an MS phenomenon in Inside MS, the MS society magazine. If you are stressed, overheated, have a virus or other trigger, you can have pseudoexacerbations. Usually 24h or less in duration. Then they clear. They talked about people sunbathing at the beach and finding that when they got up, that they couldn't. They had to be carried to the car. It happens to a lot of folks. Cool them off and its all better. OVerwork, emotional upsets etc were all listed as triggers.

The article is at
http://www.nationalmssociety.org/IMSJul ... kOrNot.asp
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Postby Sarge » Wed Mar 12, 2008 9:15 pm

Along these same lines, this leads me to a question: how often should you be reporting symptoms to the neurologist...especially when they're very minor in nature? The reason I ask is because I had a major exacerbation back in December, which I have completely recovered from (severe paresthesia/ataxia/foot drop of the left leg). However, over the course of the last day or two, I've experienced a very mild tingling in certain spots on my left arm and the tip of my left thumb. Nothing at all like my exacerbation, and at times, it's barely perceptible. However, it's been 24 hours, and it's still here. I should mention that there's no weakness, shakiness, or loss of strength in the arm; in fact, I was just at the gym today, and lifting moderate to heavy weights as I normally do.

Basically, my question is this: should I be reporting every minor symptom, or every one of these mild flares to my neurologist? I've also had a couple of very small transient flares that have lasted for only a couple of hours. Thing is, I don't want to have to start a round of meds everytime I get a small amount of numbness, and in addition, if I report every minor symptom to my doctor, I think he's probably going to get tired of hearing from me after a while.

I know that in terms of these symptoms, some of these things are just part of the package and we have to live with them, and I don't want to make a big deal out of something that isn't giving me any trouble. However, I'll be starting Rebif in the next couple of weeks, and the other thing that I was concerned about is whether or not it would be wise to start Rebif until such time as this flare clears up. I'd appreciate any advice in this matter.
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Postby carolsue » Thu Mar 13, 2008 2:43 pm

I have reported minor tingling that lasts more than a day or two. In my view, mild flares help tell us whether the MS is active and may be cause for a followup MRI.

I've never heard of waiting for a flare up to pass before starting a CRAB. Rather the opposite--the Rebif might help reduce the inflammation that is causing your symptom.
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Postby Punchy » Fri Mar 14, 2008 2:03 pm

I asked my MS clinic nurse about when I should report symptoms. She told me to keep a journal of all symptoms, even the little ones, and report them at my yearly appointment. But I should be more selective about what to call in and report.

She explained that everytime a person takes steroids, the body records it, and so it's best to only take them when necessary. She suggested that if a symptom was painful or affected my day-to-day life I should call in.

I can understand this rationale, but I've read that most permanent damage is done early in the disease (I am newly diagnosed) so I wonder if it is the best course of action.
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Postby Punchy » Fri Mar 14, 2008 2:11 pm

How long have you been on Rebif Auntie?
It can cause flare-ups of old MS symptoms in the beginning stages of taking it.
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