Is there any support group for people with dopamine sensitive dystonia?

Dopamine responsive dystonia is a form of dystonia and parkinsonism that is exquisitively responsive to L-dopa. I do not know of a support group for the disorder. There may be one in the US and I will check with my colleague, Dr Toby Nygaard, New Jersey, who was involved in identifying the responsible gene mutation.

Dr. T. Lynch

In your reply to Question 23 you say that fasciculation is not normally associated with PD. In 1995 I started suffering with painful dystonia in my right hand and arm,at the same time I started to experience fasciculations in my right arm and the left side of my face soon after in my abdomen and left leg. In 1998 I started on sinemet plus and these symptoms eased together with leg cramps and regular lower back problems with which I had suffered for years.Since then Parlodel has been added to my treatment(now 17.5 mgs.per day). Although far from perfect this has given me a new lease of life. Do you think my diagnosis is correct?

Thank You.

It is hard to comment on diagnosis without seeing the patient or a video of the problem. PD does not normally present with dystonia. Dystonia can occur as a side effect of L-dopa after a number of years. It can happen as L-dopa "wears off" or when "on".

Fasciculations can be benign but are not especially associated with PD. Parlodel and L-dopa can ease both dystonia and PD. It is not possible to comment further.

Dr. T. Lynch

Please tell me about:

1. Anaesthesia and patients with Parkinson's disease (risk, complications, safety )
2. Is there any relation between: medication PD and male infertility?

In general PD patients are slower to recover from general anaesthesia compared to the general population. However if mobilised rapidly post operatively PD patients do well.

I know of no association between medication PD and infertility.

Dr. T. Lynch

I am interested to know - in Dr. Lynch's experience, does a person with PD get any warning signs when he/she is about to go into an 'off'. Personally, I begin to feel a weight on my legs or arms about five to ten minutes prior to what becomes an 'off' or warning sensation prior to 'dystonia'. I hope I described the feeling prior to dystonia correctly. Some of the time I can get over this with madopar dispersible.

I appreciate this site very much.

Thanking you.

Yes. Often PD patients notice warning symptoms minutes before switching off. If they take a medication that works quickly (e.g. Madopar Dispersible, crushed Sinemet, Apomorphine pen) this can often offset the off.

Dystonia (twisting of muscles or cramping) most commonly occurs when switching off and can be relieved by L-dopa or other agents. Sometimes it occurs from too much L-dopa and is relieved by decreasing the L-dopa (keeping a diary can usually distinguish the two). I note you have had PD for 22 years from a young age - regular L-dopa (Madopar Dispersible) to keep you on (avoiding the off) can sometimes work well, i.e. Madopar Dispersible every 2,3 or 4 hours (low dose if possible). Using a watch alarm to tell you when the next medication is due can help when taking medications very frequently.

Dr T Lynch

How is Parkinson's Disease started?

Nobody knows how PD starts. It is likely there are a number of ways for it to start with a final common pathway of loss of cells in the brainstem resulting in low dopamine. What initiates the cascade remains to be determined.

Dr. T. Lynch

[In your reply to Question 16, on November 13th, you mention that "it is likely that there are genetic and environmental factors contributing to PD".]

What to do you mean by genetic and environmental factors?

My father-in-law has a Parkinson's like disease (no full diagnosis even after years of the disease), and I believe that his father had Parkinson's also.

Should I be worried that my husband may show signs of this disease in time? He is only 33 and says that his hands shake sometimes, although I haven't seen it. I am hoping that his worrying is causing him to over-react.

What environmental factors would matter to the disease?

I just want to be clear about it. Thanks.

Firstly, it is difficult to comment on genetic risk for your husband without knowing an exact diagnosis in your father-in-law. There are many diseases resulting in parkinsonism. Each may have a different cause and different genetic contributions. If somebody in the family has PD this does increase the risk slightly for siblings and children. However this increased risk is very low. It is rare to find families with two or more affected with PD.

Secondly, the commonest cause of tremor is familial benign essential tremor. This commonly runs in families. It is possible that your husband has a tendency for this benign tremor rather than PD but he/or your father-in-law should be assessed by a neurologist to distinguish between the two.

Finally, environmental risk factors for PD remain to be fully identified. Some data suggests a higher risk of PD in those who live in the countryside, drink wellwater or eat red meat frequently. This is an active area of research and we expect further clarification of these risk factors over the years.

Dr T. Lynch

I've had a few problems wich started with having what people described as panic attacks, I went into hospital for some tests (for epilepsy) which turned out to be negative. I'm only 17, but I can relate to some of the symptoms described on your pages. I have since developed a twitch in my right arm that only happens when the arm is inactive, I feel very tired a lot of the time, and am finding college a bit of a strain, if I could I would sleep at lunchtime, in the afternoon, and then go to bed @ 9, but still wake up tired with no energy to do anything. I also recently had a case of Bells Palsy. Am I too young to have PD? (my GP has referrred me to a neurologist.) Thank you for your help.

PD can occur in those less than 20 very exceptionally. However the symptoms you describe would not meet the criteria to make the diagnosis of PD. I think having an assessment by a neurologist is an excellent idea. He/she will be able to tell you of the relevance of your twitch - we all get twitches on and off.

Dr T. Lynch

I was diagnosed with benign fasiculation syndrome a few months ago from a neurologist. I went to him complaining of twitches in various parts of my body (not one side) in legs, arms, hands, fingers, thighs, lips, etc. Over the past few weeks I have developed more noticiable twitches where you can see parts of my body actually jerk. There is only a single twitch then it moves to another place. I am a registered nurse and have been worried about Parkinson's as my great grandmother had it. I have noticed some depression and when I look in the mirror I look like I am sad. I have not noticed any muscle weakness but have noticed I cannot type very well over the last few weeks. My family has a history of essential tremors and my mothers side of the family has a ataxia problem in the brainstem but affects in later years although all of us have always hand hand shakes. None of my other family members have had these twitches and jerks and they seem to be getting more bothersome and noticeable.

Should I worry about PD or something worse than just tremors or am I just paranoid? Does Parkinsons usually start unilaterally and more of a constant tremor than a twitch? Should I go back and see my neurologist?

I think you should go back to see your neurologist with your concerns. PD is not associated with fasciculations of muscle. It usually starts asymmetrically often with a rest tremor rather than a twitch. So your complaints do not sound like PD but I think for reassurance and peace of mind you should see your neurologist again.

Dr. T. Lynch

My husband was diagnosed with Parkinson's in March of 2000. We currently have no insurance and very little extra cash. This past summer I finally took him to a local hospital and after two attempts was able to get him some Sinemet (This was going through the E.R.) We were able to get into a place called the Kirkland Center. However, until he gets on Social Security the doctor will not see him again (because of lack of ability to pay).

My question is..are there any pharmaceutical companies that can help with any medicine, or is there anyway for him to get on any kind of other medicine? He needs something to calm his nerves. Help!

I suggest you contact one of the PD support groups in the USA to ask about free medication and help. They may be able to advise you further, e.g. -

The Parkinson's Disease Foundation
710 West 168th Street
New York NY 10032

(212) 3053480

Dr. T. Lynch

I am a staff-nurse currently studying for a Bsc in Nursing. I just wanted to know if possible if there were prevalence rates available for Parkinson's disease here in Ireland?

No. Unfortunately there are no reliable figures for incidence or prevalence of PD in Ireland. I would be interested in knowing about your thesis/project more. There is a proposal to develop a neuroepidemiology centre in Ireland. The study of PD would be central to this study.

Dr. T. Lynch