Dystonia Support Group

My husband was traveling 3 hours to see his Dr. in Detroit. and then 3 hours home again.

Do you have to travel far to find a Dr. that can actually spell dystonia??

sorry, that was supposed to be a topic of discussion.

My daughter has been on baclofen for a couple of years. She's currently at 30mg 4 times a day. It helped in the beginning but not so sure it is helping much now. Her neuro is not a big fan of the pump and has told us she really think it will be more of a problem than helpful. Interesting to read your experience with the pump.

Have you considered DBS??

I have been on primidone for the past 3 years. I take 50 mg 3 times a day. Most of my pain is in my neck, jaws, and shoulders. This dosage has been increased more than once, but I have real concerns about getting Botox injections which is what my doctor insists I need.

Botox is nothing to worry about!! At least from our perspective! Howard has had this done at least a couple of times.

Our problem with it is just that it will only work where it is injected. With Howard's being his full body, they couldn't inject enough at once to help.

If you were looking for relief for just one or two muscle groups it will work good!

Howard didn't have any adverse problems with side effects or anything. It was just like plugging a hole in a holey bucket of water with one finger!!

Do you understand how it works?? The best explanation I've heard so far is:- The Botox sort of puts a glove over the muscle it is injected into, causing there to be no transmission of informaition either way (to or from) that muscle that would cause it to spasm.

If you google botox, medical, dystonia

you should get a good pile of info for it.

My daughter had botox in her legs. I think 3 separate treatments over a year, but it didn't help her. I have heard from lots of other people that it is a lifesaver though. It is definitely safe if you have the right doctor doing the shots, I think that's the key, they need to know what they are doing and make sure they are shooting the right muscles.

We have considered DBS for Steph, but they have had a concern about her cognitive loss which is not dystonia related. We now know it is juvenile parkinsons. We are in the process of trying a few things first with this new diagnosis and then possibly reconsidering DBS.

Howard is aware that DBS is an option, but he's not ready to try something that drastic. He has only been dealing with his diagnosis for a couple of years and he wants to make sure he has tried everything else first.

I have taken so many drugs to no avail...Primadone, Mirapex, L-Dopa, Tegratol, Haldol, Propanalol, Depokane, Clonazepam, Phenobarbital, Tranzene just to name a few over many, many years. Nothing worked...or the results where at best marginal with side-effects that made it not worth while.

I've had Parkinsons for at least 8 yers and prior to that always had intermttent problems with the neck for 10 more years. I saw chiro, acu, PT, neuro, ortho, massage, shrink, anyone I could grab. Nada permanent.
As more PD symptoms arose so did worse problems in my neck. Specifically anterocollis and severe spasms that almost drop me to the ground and a Parky gait.In other words I stare at peoples feet and find lost coins while others are enjoying normal eye contact as they converse. I tried many PD meds and Botox(safe) and anticholinergics like cogentin worked a little bit but had cottonmouth for 24 hrs. 2 months ago my neuro had read some journal articles about Periactin ( an ancient drug once used to encourage appetite), and had researched it quite a bit. I'm not going to pretend any kind of miracle happened but after a few days I could feel things loosening up on 6 mg twice a day. You need to do exercises and Caution! watch your weight, been getting up in middle of the to eat! I see a definite improvement, slight but significant, maybe 15 degrees in vertical gaze. Not spectacular, but for me means the difference between not seeing no parkng signs and side rearview mirrors, and the person coming down the sidewalk, to actually being able to greet them in a nearly normal fashion.I had no side effects except for possible weight gain. Even as I sit here typing in a little curled up ball again, I think its worth a shot. Gotta do those exercises......


Never tried Baclofen, though. Is THAT worth a shot??