Hi Debby,
How lovely to hear from you! I don't think it's a question of "wanting" (of course not, who wants these thing, lol) - but Vanessa's still in the diagnostic stage and they are - sensibly, I think, she's only 16/17 - taking a wider view of her condition as a whole, to start with. Don't you think that's the best way to deal with things in the beginning?
And hey - if it were me I'd get rid of the pink bush ...

Vanessa, step in if I'm out of line here...

all the best!

Hey Vanessa,

I don't think reflexes matter in terms of diagnosing a movement disorder. I could be wrong though! Movement disorders in RSD are commonly things like difficulty initiating movement, shaking and dystonia. I've experienced all three to varying degrees. I've had lots of problems with dystonia in my leg especially.

I've also had the muscles "jumping" thing that you described. For me, though, the movement disorder part of this stupid disease manifests itself as really tight muscles, which I just can't relax no matter how hard I try. And I also have the difficulty initiating movement thing. It kind of feels like my joints are sticky or something, and it takes a minute to be able to move.

"Back in the day," meaning when I was in high school and my RSD was way worse than it is now, I really couldn't move my leg below the knee---ankle and toes were all pulled in funny positions from the dystonia. Right now, I don't have much ability to move my toes (I can wiggle them a little bit) and my ankle is kind of tight.

That's my movement disorders experience. Hope it helped a bit!

Love,
Bets

Correct! I want to know what is happening to me, and am still in the diagnostic stage. Not that I want anything more... it is trying to figure out all that is wrong with me- I want to have a name for what is going on, as one doctor told me I had "muscle guarding" and that is why my limbs shake, and another said "muscle weakness"... and personally I feel it is a movement disorder (thinking dystonia). Not sure what to do yet, hopefully the next few doctors will give me input and tell me what is going on.


I will be taking a break from NT for a time.

Hi there,

I found a couple of links for you:
http://www.life-in-motion.org/mdrc.html
http://www.fpnotebook.com/NEU105.htm
http://jnnp.bmj.com/cgi/content/abstract/76/1/47

Roll on July, yes take a break, we all need to now and again. I really hope you start to feel some improvement soon, sweetie, please take care (let us know what the rheumy say, though!)
xxxx
all the best

hey vanessa! it's funny that you should mention this. i've also been experiencing this when i am trying to relax. my muscles don't want to chill out. especially my legs and it's so strange because it's almost like i'm being hit with the little reflex hammer. sometimes my legs just jerk like mad! i'm wondering if it's a side effect of the meds.

i'm praying for you girl!



ang

Okay, bumping this up because I am wanting info and wondering what to do-- my shakiness/ tremors are getting really bad... I can hardly walk, and typing is a nightmare without braces to calm them down somewhat.

Today the tremors started in my jaw, and I could hardly talk... it's off and on and I am not sure what to do? What will help?

I really wish my doctor would put me on baclofen, but the problem is, with the doctors disagreeing on my diagnosis, I am getting no treatment other than the medications I am on now. The PM Dr. doesn't want to change meds or start new ones at this time. Problem is- the tremors/ shakiness is ruining life!!

I understand that the doctor won't add medications, as I am on quite a few, but I think maybe I should be switched from old Valium to the newer/ better baclofen?!

Would love input!! Thanks!


ALSO WONDERING: I have my muscles lock up and I am unable to move (which sounds like dystonia), I have my muscles thrusts themselves around (sounds like dystonia?) and then I can hardly walk from the shakiness, my hands/ arms shake, my jaw shakes-- and this all sounds like tremors? Muscle spasms? Could a few things be happening at once?? What to do?

Better go... thunder and lightening storm... I better turn off the computer. Thanks a bunch!

Does the US work on the medical definition of disability or the social model?

If it's medical then they don't bother treating till you have a disease.

If it's social then they don't care about the disease, just what the symptoms are and how they should be managed.

Have you asked about trying Baclofen?

Love ya tons

Frogga xxxxxxxxxxxxxx

PS Dragon controls everything but there are finger mice.

I've had the body jerking also. It has calmed down but every once in awhile it will flare.

As far as diagnoses. Let me tell you, I would go to every kind of Dr. going to get diagnosed.

I think it takes more then one Dr. to diagnose someone who has more then one or two things going on. If your insurance will pay then go to a Neurologist, Immunologist and any other Dr. that might have insight to what is going on with you.

I have seen a lot of them. My PCP has sent me out to them to help get me diagnosed and neither one of us feel like I know what is causing all of my problems. He just sent me to an Immunologist two weeks ago and I go back next Tuesday to find out the results of my blood work and sleep study and chest xray.

Don't give up and try and find the right kind of Dr. for what you think might be going on with you.

I know what you are going through and you are young and very wise and have enough common sense and knowledge to know that there is something wrong and you need answers.

Hang in there and don't give up. You will finally find the right Dr. that will be able to diagnose at least some of what is going on with you. A lot of us don't just have one or two things going on we have a lot more.

Have a good evening,
Ada

I think social, but might be wrong... I don't know too much about it. I do think that medical plays a role in it too though. (anyone who knows, please say so!)

My PM Drs. have already stated that until I see other specialists and they are sure it's RSD that they won't add or change meds.. However, they do agree that diazipam is old and outdated to use, and they would like to change some medications.

Cool, thanks for telling me! I was just wondering...