nurses with multiple sclerosis

[rkpgb]

I am interested to know if there are any nurses out there that are dealing with multiple sclerosis. I was recently diagnosed, and have had to make some life style changes to deal with it.

I'm wondering if anyone can give me some helpful suggestions on exercise, how to deal with fatigue, and if you have any problems with your nursing management understanding your ailment.

[discarded APN]

Jenny P.

Yes, I was on betaserone for over 2 years and tried copaxone for a little while. Unfortunately the betaserone wasn't effective for me and I progressed rapidly. Couldn't really call it relapsing/remitting anymore because I forgot to do the remitting part:chuckle (just kidding) I then tried copaxone and experienced bad side effects with it. Chest pains, palpitations, respiratory depression. The doc I had at the time told me that those symptoms weren't really life threatening, just bothersome.

The neurologist I changed to didn't agree and I went back to the betaserone for a while and then the doc decided that it wasn't doing anything for me and we stopped it. Avonex and betaserone are both interferones with the same effects so I haven't done the avonex. I read a lot of the research on these drugs.(one of the problems with getting a disease in your own specialty) While they help a lot of people, they don't always work for everyone and I wasn't one of the lucky ones.

I have had lots of IV steroids and now have no veins left. (hence, the PICC) The steroids aren't working for me anymore either. Now they want me to try Novantrone. It's one of the chemo drugs used for guys with prostate ca. The thought is that if they use that, the nasty side effects that they find when it's used for ca patients, (frying the immune system) will/might help slow down the progression of MS. The chances of it being effective are about the same, actually slightly less than the MS ABC drugs.

They are starting some bone marrow transplant studies for MS.

I'm thinking about these last two things. Trying to decide if it's bad to accept that this is where I'm at and to continue to adapt to what I have left and to refrain from "grabbing at straws" and trying all the new things that are coming along. Especially when the success rates are so low. I've worked research long enough to know that the people on the research protocols are those who have failed all the conventional treatments and basically "have nothing more to loose". I'm just tired of "re-inventing" myself over and over again and trying to prove to people that I still have some worth. MY BRAIN STILL WORKS!!! my legs don't (and a few other things from about the waist down :stone Most people can't see past the wheelchair though.

Is it "giving up" or is it "acceptance"?

Since my employer decided that they weren't "legally required" to find another position for me and terminated me, I'll be loosing my health insurance in another 10 months or so. I'm covered on my husband's, but it doesn't provide anywhere near as much as mine did. At least I found out that the drugs weren't helping me, before I ended up loosing our home due to the cost of the ABC drugs without insurance to cover them.

Sorry, I'm rambling again:imbar It does feel pretty good though. Thanks for listening.

[NatashaArian]

i have been exp. Some symptoms lately...the first symptom showed about 2 years ago, but i thought of it as "stress". After i had a car accident cause by conversion syndrome, i had an mri done. The neurologist told me there was a small white patch on the left side of my brain..but it was too soon tell what it was.

so about 2 and a half weeks ago, i suddenly started having some symptoms..they are:

woblly gait

jumping (the only way i can describe it) vision. The object i am looing at doesnt "jump" but the objects in my peripherals do.

slight memory loss

fatigue

slight tremors

dropping things (toothbrush, keys, forks, ect..)

they stopped..then started again. Any ideas as to what it could be?

-thanks!

[Jules A, MSN]

There is a long thread on the disability section here where nurses with MS have written, check it out.

[Silverdragon102, BSN]

i have been exp. some symptoms lately...the first symptom showed about 2 years ago, but i thought of it as "stress". after i had a car accident cause by conversion syndrome, i had an mri done. the neurologist told me there was a small white patch on the left side of my brain..but it was too soon tell what it was.

so about 2 and a half weeks ago, i suddenly started having some symptoms..they are:

woblly gait

jumping (the only way i can describe it) vision. the object i am looing at doesnt "jump" but the objects in my peripherals do.

slight memory loss

fatigue

slight tremors

dropping things (toothbrush, keys, forks, ect..)

they stopped..then started again. any ideas as to what it could be?

-thanks!

as per terms of service we can not offer medical advice. you really need to go back to your doctor and discuss this with them.

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