Dystonia Support Group

Hi!
My husband's Dystonia affects him about the same as your cousins. My husband's is not quite as severe though (I think). Howard doesn't have to use a wheelchair, (there are times I wish he would!) And he only uses a scooter/buggy when he is really bad and he has to do alot of walking.

Dr. Peter A. LeWitt, M.D.
Parkinson's Disease & Movement Disorders Clinic.
26400 West Twelve Mile road,
Southfield, Michigan
48034-1771

When we were seeing him he was in suite 110. But he has moved within the building to a different suite. I don't have the number for it, Sorry!

The phone number I have for him is:-
1-(248) 355-2452

Dr. LeWitt can be googled, you'll find all of his praises in there! We haven't seen him for more then a year, but when we last saw him he was the Director of 'The Parkinson's Foundation'.

If it matters he is also connected with the Henry Ford Hospital there in Detroit.

If I can help any more, just come find me! I hope this was helpful for you!

I am in Midland, Mi, if it helps to know the travel path!

God Bless!

Janelle

Thanks Janelle,

Is there any medications that have helped your husband? It's sounds as though it's pretty hard to find doctors that are familiar with this disease. I think my cousin has a harder time because he gets disability, state funded insurance, whatever it's called. He doesn't have private ins. so I think he doesn't always get quality care.

He also battles with depression (some suicide attempts), and substance abuse. I thinks it's really hard for him to get help in these areas simply due to the fact that people cannot understand him. Did your husband ever get depressed?

On a more positive topic. I hope you and your husband have a wonderful holiday!

Thanks for the info.
Kristina

It took us almost 3 years to get the right diagnosis for Howard. When we did get the Dystonia dx it was from a Rhuematologist we had to go see because the state wanted him (the Dr.) to refute the previous dx of Anklosing Spondylitis. We already knew this wasn't the problem as, A.S. is a bone disease, and Howard definitely didn't have a bone disease! Anyway, this Dr. was actually interested in Howard's problem so we stuck with him. He was a wonderful source for information and he did all of the referrals to get Howard in with Dr. LeWitt.

Until This rheumy, we had been thrown to the curb by tons of Dr.s. If their first try for a dx didn't work, they were done. We wasted a ton of money going from Doc to Doc


Howard had the best luck with Baclofen it is a muscle relaxer. Sinimet, and Requip were good too. These last two help control the spasms and flailing

The way Howard's Dr. explained it to him, ANYONE With chronic pain should be on an anti depressant. Pain begets pain, eventually, even if the original cause of the pain is gone the pain will still be there because of endorphans, and other neurotransmitters.

Talk to your cousin, If he is against the antidepressants try to help him understand that depression from chronic pain is caused by the body's reaction to the pain. No Dr. on this planet will be able to help control your cousin's pain unless the Dr. has the help of the antidepressant. If your cousin wants the pain to go away bad enough, he will agree to the antidepressant. There isn't any option other then this right now.

I'll be here most of the day, just chime in if you need anything!
God Bless!

Janelle

I take Neurotin and Zanaflex along with Cymbalta. Neurotin calms the nerve endings, Zanaflex is a muscle relaxant, and Cymbalta if an ani=tidepressant. What has been said about pain causing depression is so true. When we are in pain our brain's endorphins get messed up and the only way to help break the cycle of pain and more pain causing depression and then depression adding to the pain is with an anti-depressant like Cymbalta, Paxill, Remeron, even Elavil (I DON'T like that one). Those of us with conditions like dystonia, that cause severe pain, accept life on anti-de[ressamts.
Good luck with the DR. in Detroit.

I have segmental dystonia (affects more than one part) and have had success with botox and Klonopin. DBS may be of interest to you. Contact the Dystonia Foundation@1-800-377-3978 or Dr. Oz @Johns Hopkins in Baltimore (he diagnosed me). He is the medical director of the foundation and has the most current information.

Dr. Antonio De Salles is one of the best in the world , specially in this field. He is in UCLA medical Hospital in Los Angeles. He gave my Husband a normal life with DBS surgery. My Husband has had Generalized Dystonia for over 20 years.

I do not have Dystonia that is constant, it comes in waves as a reaction to certain medications for Bipolar Disorder. When it comes, I can't walk, swallow, breathe, or see. I take Cogentin also called Benztropine (sp) and it resolves fairly quickly. I don't know what meds you've tried, but maybe this one will work. Sorry I can't help more.

I apologise in advance if I am direct and to the point. I feel very strongly about dystonia, its out to get me... I can only try to help from my own knowledge of having this for nearly 40 years.

I would suggest that all available tests are carried out. All genes/DYT tests and to see if he's dopa-responsive. Scans need to be carried out and options considered. (DBS/pump/meds/injections) You can never ever get enough opinions and tests. I have had at least 10 specialists. Do not take their words for granted. Research and do what makes him happy. Watch for drug interactions. Do not let it be everything.

For myself, I disagree with antidepressants as an approach to pain. Pain can be managed in a number of different ways and also the type of pain.

For muscle pain and stiffness, fish oils can be taken every day and also exercise. Now, I know exercise may sound silly in this situation but I have found it very very important. The only time I can stretch properly is if I have taken cannabis but other muscles relaxants can help such as diazapam and baclofen. In the UK we can get synthesised cannabis from the doctor but this doesn't work as the active ingredient that seems to help the muscle stretch is removed. I have checked this with a number of renouned specialists and they agree. I have had regular anaesthetic injections for pain, some people have botox. Some rely on physchological warfare/management, whatever works.

I am not suggesting we all take illegal drugs but I am informing you that it may be worth a try. I don't smoke or drink but I do eat a cannabis cake and do stretching every day. This enables my muscles to not contract so much as to get stuck and painful. Cannabis is known to help greatly with dystonia but is more acceptable here in the UK than in the USA.

My neck did get totally stuck one time and they wrenched it back under general anaesthetic (not advisable apparently but it worked).

I was told I would be in a wheelchair by the time I was 40. I am now 43 and I work full time (admittedly I have alot of time off) and I am a drummer in a band and do gigs all the time.

Remember, on average it takes 15 years to get a proper diagnoses for dystonia.

How long has he had it? How old is he? Since is not able to say so, may I say, if he could, he may thank you for caring enough to learn about his Dystonia. My mom cares, but my sisters or children, not interested in hearing about it. Does he have a Neurologist that is good with him?

I am new to this group and an interested in the different types and symptoms of dystonia. You all are brave individuals!