bobalou

Close Multiple Sclerosis (MS)
Type: Relapsing-remitting MS

I was diagnosed with MS in Jan. 2000, however I had symptomslike vertigo and tingling in my legs for 12 yrs. before that. I had mixed emotions when I heard the words "MS." I was afraid of those words but on the other hand I was relieved to finally know what was wrong with me. I go to the Mellen Center for MS at the Cleveland Clinic. It's a 5hr drive from where we live so that's hard for me. I've progressed these past 9yrs. & that scares me. I cry sometimes for the past and the future.

Treatments

Aqua Therapy Working / Worked

When my husband & I go on vacation we always stay at the same house which has a hot tub. I LOVE IT!! He turns the temp down to about 100 since the heat is too much to handle. It's the right temp so I don't wilt and am able to enjoy the jets on my ol body! It does wonders for me! :)

Avonex Not Working

Did not work for me. I was on it for 3yrs. I would end up in bed for 2 days after an injection due to the flu like side effects. It was miserable!

Baclofen Somewhat Helpful

I'm on 70mg of Baclofen, I still get awful cramps in my feet and my calves mostly during the night and when I first wake up and stretch real big. I don't experience any side effects. I've taken it since 2000, so I don't know what it would be like to not take it. I suppose it's working.

Copaxone Working / Worked

I'm on Copaxone now. Much better than Avonex for me. There are absolutly no side effects and the subcu injections don't hurt at all! There's 7 sites to inject so you're always rotating per week. I've been on it now for 6yrs. I'm seeing some progression of my MS but I think for the most part, it's working well.

Neurontin Somewhat Helpful

I take 1200mg of Neurontin at bed time. I've taken it since 2000 too, so I suppose it's working. I don't experience any side effects from it either.

Physical Therapy Not Working

I've tried Physical Therapy but I can't drive so I had a hard time getting to and from so it just didn't work for me. They started coming to my house after I was in the hospital for solumedral treatments due to the vertigo, but no matter how hard we worked at it, it just didn't help.

Prednisone Somewhat Helpful

The only time I've taken prednisone was when I finished with the solumedral treatments. It was a tapering off of the steroids. All I did was cry. Very emotional!

Provigil Not Working

Provigil worked for me in the beginning but I got used to it and it no longer helped. I take 60mg of Adderall now in the mornings by noon. It helps tremendously with my fatigue! Every now and then I have a day or so when it doesn't work too well. I think that's just my body letting me know to take it easy, you have MS! I've been on Adderall for 4yrs.

Solumedrol Somewhat Helpful

The 1st time I had a solumedrol treatment, it worked wonderfully! I had a little too much energy! Due my vertigo, my Dr put me in the hopital for the treatments. I constantly walked the halls and had trouble sleeping. I was so happy too! That was before she put me on all the other meds for MS. After that, it was all down hill. All I did was cry and sob all the time. It was really awful. I had treatments 4yrs in a row and I never got any relief so I haven't had them now for about 5yrs.

Swimming Working / Worked

We just returned from my cousins house in VA. They have a wonderful pool and it felt sooo good to dangle my legs from the side in the warm water! I get injections of Kenalog & Lidocaine in my hips so I feel like it helped them as well. I sort of did some water exercises and really enjoyed that and I think I really benefitted from the pool. Wish I had one! :)

Symmetrel Not Working

I took Amantadine after I was 1st diagnosed, It never worked at all for me.

VESIcare Working / Worked

VESIcare is working great for me! I was taking Detral LA and it made my feet Ankles swell terribly so my Dr changed to 5mg VESIcare. No side effects at all best of all no more accidents!

Namenda Too Soon to Tell

I started taking 20mg of Namenda not too long ago. My memory is getting bad! Its used in patients with dementia that was alarming when I 1st heard that. Thats all the Namenda website talked about too. Then on Wikipedia I read where its used on MS pts as well. That made me feel a lot better. I sure cant tell its working yet though. Im as forgetful as ever! Hopefully Ill see some improvement soon. It made me sleepy when I 1st started on it but now it doesnt bother me.

Nexium Working / Worked

I also suffer from acid reflux and GERD. I try not to eat anything 4hrs before going to bed. Nexium is 40mg and works well. Our head of the bed is raised about 6in so that helps too. I take 20mg of Reglan to help with digestion. Works well.