Test Results

Talked to the doctor today and got the results. All tests including the MRI came back normal. YAY!!! Dr. office had me scared because they said he had to see me today to discuss. So, just primary generalized Dystonia in all 4 limbs now. Going on a new medicine and go from there. I was told today that if it gets worse, ...I am a candidate for DBS (Deep Brain Stimulator). We'll try this medicine first. 

So now I am on Gabapentin (Neurontin). Started Sat night with one 300 mg tab. I do that for a week, then go to 2x a day for a week, then 3x a day for another week, then add a 2nd tab to the evening time for a week, etc. until I'm at 2 tabs (600mg) x 3 times a day (total of 1800mg a day) We'll see if my system will tolerate this one.

Still waiting...

Well, still waiting for the results from the newest tests. I figure I will give the Dr a call next week.

I have been taking a lot more pain medicines lately. I hate that, but not only has stress been aggravating my Dystonia, but my lower back has acting up a lot more. I've been having spasms and wake up almost every more so stiff it hurts to even roll over. Most of the time I'm able to loosen it with a hot shower.

On the good side of things, Thanksgiving was nice. Fell asleep after dinner and now I can't sleep. And we have almost all of our Christmas shopping done already. It rocks. Thank God for the internet.

Well, that's the latest for now.

Brian MRI

Today, I had another Brian MRI with contrast. This is my 3rd one with nothing yet. Everything was okay except when he put the dye in my arm. I guess the vein collapsed and some of the dye got in my arm. OMG, that hurt like crazy. I had a big knot. Put ice on it and it's better, but sure it will bruise. They said the Doctor will have the results tomorrow. Probably won't hear anything though. That Doctor's office sucks.

Fingers crossed. 

Bye, bye Artane

Well, after 2 1/2 weeks on Artane, I am going off it tomorrow. Spoke to the Doctor's office and we agreed I need to get off this medicine. I am so grateful. I started off taking it in the evening before bed. I had fogginess, dizziness, dry mouth and tiredness. When I started the second dose, everything increased and I even had 2 hallucinations. Not a good idea when you have a two year old. i felt like it's not worth it. I'd rather be in pain than live my life like that.

Artane Cont...

I've now taken 2 doses of Artane. Joy! The pharmacist said to take it at night- best advice ever. It has really helped with side effects. It makes me so tired. Only thing I have during the day is dry mouth. This morning I awoke in a bit of a fog this morning. Pretty grateful my parents are in town right now. Less to have to worry about.

Saw a Movement Specialist

On Oct 13, I went to see a new doctor, Dr. David Song. Dr. Song is a Movement Specialist that Dr. Sheean sent me to see because everything was progressing. I had another thorough examine to which he determined that it was more than focal dystonia so he's now categorizing it as generalized dystonia. Kinda bummed about that. He also thinks that there is another, underlying condition going on as well. I definitely have dystonia, but it doesn't follow typical patterns. I'm one of those strange cases. Oh joy. So now, blood work, a  24 hour pee test, MRI of the brain again oh and a visit to an ophthalmologist. He's looking at Wilson's disease, but don't think it's it. I've had a couple cooper tests and liver tests before. Everything was fine there. But we'll see.

Meanwhile, he has put me on Artane. I picked up the script today and will start tonight. Not looking forward to it. I've heard there are nasty side effects with this one. Guess we'll see.

Yesterday, I went to get my botox injections with Dr. Sheean. He had mentioned that if my father was in town we I had an appointment, he'd like to check him out. My father has a tremor in his hands and he wanted to see if they are related. So, mom & dad went with me. He looked at dad and it's just a tremor. Has nothing to do with my dystonia. That was good. :) It was good to hear that he didn't give this to me. I was releaved for him. I could NEVER blame anyone for passing it to me, but I'm sure a little part of him worried about it. I would if my kid had a terrible condition.

I'll post more as I know more.

Disability Approved

Well, good news, my SS Disability was approved on Thursday, Oct 8, 2009 after 1 1/2 years of trying. For me, it went through during the reconsideration appeal. :) Still haven't received a letter about it, just the phone call and a large deposit in my account. :)

Such an incredible relief.