Paranoid-still no recovery and worse

[Mynamegoeshere1]

I was diagnosed back in october of 2011 after a month of going in and out of the ER in serious muscle spasm pain and later tested for MS because of pain, symptoms and my history of falling. My dr has tried 2 dmd's, baclofen, determined I have fibromyalgia too and put me on cymbalta, but I'm always in so much pain from spasms in my legs, arms, neck and my whole body feels like it is a huge bruise. I cannot even hardly walk more than from my room to the living room. No driving either because I hit curbs and my leg locks up. This does not sound like RRMS from what I've read. I've had 3 relapses since October with constant new lesions showing up. What is your advice?

[cosake]

I don't know that I have an answer for you, but didn't want your post to go unnoticed.

You are still pretty newly diagnosed. My doctors have said that DMDs should be given 3 months to see if they work or not. How long were you on the DMDs ? Which ones did you try ?

Has the doctor said that you have "constant new lesions" ? The only way to know this for sure would be if you have had multiple MRIs in a short period of time. Most doctors don't recommend MRIs that frequently.

It's my understanding that a relapse must be separated by at least 30 days symptom-free to be considered a separate relapse. Is it possible that you have just been experiencing one big relapse instead ?

Have you seen another doctor for a second opinion on your Fibro and MS diagnsoses ?

[dougl]

I've had 3 relapses since October with constant new lesions showing up. What is your advice?

it could be progressive-relapsing multiple sclerosis (RPMS)

sorry for your troubles. i hope you find some answers

[Cat Mom]

I agree with cosake, as you are newly diagnosed maybe the DMD that you currently take is new to your system and hasnt "kicked in" yet. You didn't mention which ones that you have tried, I was told COpaxone takes 6 months to start working.

Which DMD are you taking?

[rdmc]

You could ask your neuro for a referral to a pain specialist. Maybe they could help you get a handle on your pain.

Most of my pain is from spasticity and baclofen (oral at first, then the pump) helps me get a handle on it. You said you tried baclofen, in what dosage? The reason I ask, you said when you drive your legs lock up...mine do too and for me that's caused by spasticity.

You didn't mention if they had tried any sort of med for neuropathic pain, like tegretol or neurontin. From your description it doesn't sound like that kind of pain, it's usually described as burning.

That's why I think a pain specialist might be able to help identify the exact type of pain you're having and come up with a strategy for helping you.

Hope you get some relief.

[kellygrn]

2 other drugs to try

Zanaflex is a muscle relaxer that works on my leg spasms. Baclofin did nothing.

I take Temazepam for restless leg syndrome. It helps keeps my body relaxed so I can sleep.

PERSONAL QUESTION -
I live in The Woodlands TX. Who is your neuro?

KK

[Mynamegoeshere1]

Answers

Right now I'm on 40 mg baclofen. 20 in am and 20 in pm. Ive had my diagnosis confirmed by 3 nueros. 1 Nuero that was fairly new and I made her send all tests to her supervisor which runs the ms clinic in Houston and he confirmed. I am now seeing another Nuero that confirmed. The only reason I've had so mant mris is because despite the constant pain, there are periods of worsening symptoms where my speech is slurred or I can't swallow or walk straight or just plain can't walk at all. They have all shown new active lesions requiring steroid treatments.

I tried copaxone first but had a bad allergic reaction and I'm now on Betaseron. I was on lyrica, but again had a bad reaction, so was then on gabapentin. I have PTSD and depression so I was on an antidepressant and my psychiatrist and Nuero decided to take me off of the gabapentin and antidepressant and try cymbalta instead instead of being on so many meds. I also take zonesimide (spelling) and Xanax and Prilosec. I go see him tomorrow. I've also been waking up off and on with a swollen reddish/purplish foot that is hot to the touch but only once or twice every couple of weeks.

When I walk for too long, my legs lock up and my ankles hurt so bad they feel like I sprained them both. It's just strange. Maybe I'm just getting used to my new life and maybe this is just how MS just feels.

[Mynamegoeshere1]

Nuero

I live in friendswood and am seeing dr Loftus with bellaire neurology. I wanted to see dr. Hutton who confirmed my diagnosis, but he takes WAY too long to get into and just took over all of dr. Rivieras patients too. Who do you see?

[kellygrn]

I've had MS since 1960. Tried all the interferon's & was allergic to them. Then went on Copaxone for 15 years. Never improved & continued to get worse. So stopped it. Then got brave & tried Tysabra for a year. It seemed to be helping but scared myself into stopping it when the ER docs sent someone home with the brain thing you get from Tysabra. They told him he was fine. He wasn't & went to one of the downtown hospitals.

Now not taking anything since I am SPMS. Just living life as it comes. But then I am 64 years old & retired.

Hope you get it all straightened out soon.

KK

[Cindarelly]

It sounds too early to say for sure if you have RR or a more progressive form. There are other things besides the interferons.
I hate to see someone give up early on in the game.. DMD's take time.

You will find a new normal and no!, it won't be the same.
Best wishes, on this track, somedays are downhill and other's are up

[Mynamegoeshere1]

Spasticity

He thinks its my spasticity still and the other stuff is just my dmd's not working fully yet. He upped my baclofen and will increase my dose until he can't anymore, then will try a new medication. After that, he will try to inject the baclofen to see if I'm a candidate for the pump as a worse case scenario, but that's a long way off. I'm hoping for relief soon.