A little update for my friends on the MS boards - Multiple Sclerosis Message Board

Wallis86 · 12-07-2008, 01:37 PM

Hi all,
I've missed updating you all. I don't remember where I left off a while ago, so forgive me if I repeat anything.

Basically, I've had to move home to NY until January. I started taking Sinemet (levodopa) to treat my "dopa-responsive dystonia", as they thought it was. The Sinemet made my dystonia so bad that I couldn't care for myself. I got off the Sinemet and improved. However, after an appointment with a new movement disorder specialist who told me to stop the Sinemet, my feet curled up and have stayed that way ever since. I haven't walked in over 2 months now. Then about 3 weeks into that, I woke up one morning with my head stuck to the left and my left shoulder stuck up by my ear. That stayed permanently too. Basically, the dystonia spread to involve my back, which makes me twist and lean over sharply to the left, and my shoulder, neck, legs, and arms (intermittently still). It got much too hard to live alone, unable to do laundry or cook for myself, or even bathe myself some times.

So my dad flew out to bring me and my cat home. I have an appointment friday with Dr. Greene, a movement specialist at Columbia, and an appointment next monday with Dr. Hirano, on of the top mitochondrial disorder specialists, also at Columbia. We're still working on the mitochondrial problem, if it exists.

Basically I have a few possible problems... 1. primary generalized dystonia (DYT1 negative) 2. Secondary generalized dystonia, secondary to mitochondrial myopathy 3. Secondary tardive dystonia, caused by medications I took for years, which is permanent 4. I might have dystonia caused by neurotransmitter deficiencies, but not fixable by dopamine supplementation.

I'm having a rough time at home since the house is not at all accessible. So I'm carried everywhere, which I hate. I'll keep everyone updated

MSJayhawk · 12-07-2008, 01:48 PM

It is good to hear you getting on the forums. I am sorry that you have progressed to your current state. My mom takes Sinemet for her Parkinson's. I know for her it makes her sleepy as well as causes hallucinations.

Due to my latest battle my left leg is pretty useless for mobility. As a result my doctor has asked me to get a passive exerciser to keep my range of motion and assist with my muscle strength and tone. I have tried looking for a Theracycle, but it is too expensive. I have just purchased an Exercycle. The Exercycle has been around since the 1930s and is the predecessor to the Theracycle. Would this help you too?

I will mention your leaning to the left to my mom. Her leftward direction is mostly from her subderal hematoma from her accident. She veers left even in her powerchair.

I will keep you in my prayers. You are blessed to have a father and family who care for you- the best medicine. Check with your local state rehabilitation agency for assistance with making your parent's home accessible.

I hope you are able to soon regain some independence. Many blessings to you.

Wallis86 · 12-07-2008, 09:30 PM

Jayhawk,
I've considered using a passive ROM machine, but I'm not sure what will work for me right now. I was doing passive ROM 4x a week originally at PT, but it tends to make my dystonia significantly worse, so I'll have to talk to the doctor about what I should be doing. I think my biggest issue right now is that when my dystonia acts up, my left arm feels like it's half dead... I don't know if maybe I'm trapping a nerve from my shoulder being stuck up or something, but it feels like my muscles don't work. It's not a tingling or anything or a numbness... just a dead/weakness.

I know Sinemet works fairly well for Parkinson's if you can tolerate the side effects... I'm never going back on it though... It made me have serious bouts of akathesia, where I literally couldn't stop moving because I had this deep crawling sensation throughout my body MAKING me move. It was truly torture to be unable to stop it and it brought me to tears and eventually the ER once it switched from akathesia to dystonic spasms/chorea as a dystonic storm.

But I at least know I'm doing everything I can for myself right now. Jayhawk, we'll have to talk service dogs in a couple months too

Wallis

MSJayhawk · 12-07-2008, 10:50 PM

I know what your arm feels like. Have you tried a masseuse? A masseuse might be able to assist you with some of the muscles. I do not know how well I will do on the passive machine. I hope to take delivery within the next two weeks. My doctor wants to see how I do. I am going to give it a go. If a passive ROM worsens your condition, then I would back off.

I am glad you are off the Sinemet. I know my mom would rather be off the Sinemet.

LOL, I look forward to shop talk on service dogs

Wallis86 · 12-08-2008, 04:15 AM

I haven't tried a masseuse, although I did get my sister to massage my shoulders and upper back yesterday. What I've found is that it feels goodish, like a massage does, a little painful, but it doesn't do anything to help my dystonia. It's like the muscles are so permanently seized up that nothing makes a difference.

I feel like I NEED to do something to preserve my muscles, I know the dangers of not walking for so long, and how hard it will be to ever gain that strength back. I was also told by my OT that my arms are nearly shot too. She has told me I really should only be using a power chair, even if I can use my crutches again, because I need to save my arms. If I don't have working arms, I'm in trouble as far as independence goes... no transfers, no manual chairs, no crutches. I hate using the power chair though... It's so inconvenient and I can't take it anywhere. I don't have a van :/