Question 172

Answer

Question posted March 4, 2003

I am wondering if you would be willing to give me a second opinion on my condition as it would be fair to say I am extremely confused . My neurologist has not to this date diagnosed P.D and still seems to think that I have dopamine dystonia even though taking 125mg of sinemet did not have any effect on my condition . I am currently taking 275mg of sinemet 3 times a day . When this drug wears off my symptoms reappear and even when they are working I still suffer from falls as my feet appear to stick to the floor . At the age of 34 I still think I am to young to have P.D but then again I also do not think that it is dystonia as I don't suffer any pain just stiffness and the low dose of sinemet did not work . Also my other symptoms are not in any way related to dystonia but are very much to P.D . Would you be willing to see me privately if I traveled to Ireland ?

Thanks again

Answer posted March 6, 2003

Doparesponsive dystonia can have a variety of presentations (twisting of foot/leg with increasing stiffness later in the day) that resolves beautifully to low dose Sinemet. Pain does not necessarily occur in DRD. It is possible to develop DP (e.g. Michael J Fox) at 34 but uncommon.

It would be wrong of me to recruit patients via this website (I see more than enough anyhow!) However if your GP referred you for a 2nd opinion we could arrange this either in the movement clinic or my office.

Dr. T. Lynch

Question 171

Answer

Question posted March 1, 2003

I have just been diagnosed with papilladema. I have Arnold Chiari Malformation and have been tested for MS to no avail. I have recently had multiple MRI's and the neuro team here does not believe anything is wrong with me. Can you have optic nerve edema without anything showing up on an with me. Can you have optic nerve edema without anything showing up on an MRI. RE: CSF build up tumors or lesions.My eye doctor sent me with pictorial proof of this to neuro. I am also having seizures that they are claiming are pseudo seizures. If you could shed some light I would greatly appreciate it.

Answer posted March 10, 2003

A lot of questions but no easy answers. Papillodema (swelling of the optic nerve) usually occurs when there is pressure within the brain from various causes. There are things that look like papillodema and so can mimic it, e.g. papillitis (inflammed optic nerve) or Druzen. A normal MRI brain excludes brain tumours and nearly excludes MS as a cause for your eye changes. It is hard to comment further as your story is obviously complex.

Dr. T. Lynch

Question 170

Answer

Question posted February 11, 2003

My father suffers from PD which has been controlled well by the drugs, but he also has Lewy Bodies and this has always been the worst part. I have read that the average timespan from diagnosis for this is 7 years, but I cannot find anything that indicates where my father is with regard to any stages of Lewy Bodies. Are there any guidelines? Currently he has been very aggressive to my mother, is in an EMI ward and Mum is desperate to bring him home. He is incontinent and is being sedated most of the time, but he can still walk and eat himself.

I am moving nearer to try and help but don't know how much time we have left and what the dangers are if we do bring him home. Any help or guidelines would be much appreciated.

Answer posted February 24, 2003

Lewy body disease (diffuse Lewy body dementia) is where the pathological hallmark of PD (the Lewy body) is dispersed around the brain rather than simply localised to the brain stem (substantia nigra) as found in PD. Patients with DLBD develop parkinsonism, marked day to day fluctuations in thinking and mobility, hallucinations and jerks (myoclonus) of the body. It is difficult to treat as Sinemet/Madopar can aggravate the hallucinations but the patient becomes immobile without them.

In general I try to minimize medication especially sedating drugs as DLBD patients are very sensitive to them, e.g. Haldol, Melleril, all of the typical neuroleptics must be avoided. The benzodazepines (sleeping pills) should be avoided if possible. Then i usually use an atypical neuroleptic (seroquel, zyprexa) to block the hallucinations whilst not making the PD worse. Next I add an acetylcholinesterase inhibitor (Arciept, Exelon, Reminyl) as these have been shown to improve memory and lose confusion, agitation and aggression without sedation in DLBD. I have noted some patients improve steadily on these agents over months "like coming out of a fog". Therefore the patient ends on Sinemet/Madopar, an atypical neuroleptic and an acetylcholinesterase inhibitor for quite a while waiting for improvement (patience is required).

T. Lynch

Question 169

Answer

Question posted February 3, 2003

My father is aged 67 and has had Parkinson's Disease for 15 years. He has copious drooling for most of the day, which tires him out, and he is constantly holding a tissue to his mouth. His neurologist prescribed Scopolamine patches to treat it. During treatment with the first patch he became quite confused at night time, so the treatment had to be stopped immediately. He has been told that other similar treatments may have the same side effect, i.e. confusion.

He would value your opinion on how his drooling could be treated.

Answer posted February 24, 2003

Drooling can be a real problem in PD. Scopolamine is an anticholinergic that dries up secretions. HOwever all anticholinergics can cuase confusion and hence Artane, Kemadrin, etc, would have to be used very cautiously with your father. Other options include using Atropine eye drops - the patients uses 1-2 drops orally to try and dry the mouth but since the dose is low hopefully avoid the confusion. Botulinum toxin (Botox, Dysport) into the parotid salivary gland is very effective for excess drooping. it lasts about 3-4 months. I do not administer Botulinunm toxin yet but perhaps your neurologist does or a local ENT surgeon.

T. Lynch

Question 168

Answer

Question posted January 31, 2003

Is Parkinson's disease hereditary?

Answer posted February 24, 2003

In general PD does not get passed on from generation to generation. It is clear that genetic inheritance does increase the risk of PD but there has to be an environmental trigger also. We, and many others, are studying genetic aspects of PD to try and throw some light upon the mechanism of neuronal death in PD.

T. Lynch

Question 167

Answer

Question posted January 8, 2003

I can't seem to find any information on taking Carbidopa by itself. My father has been taking this medicine for years without Levodopa and was wondering how I could find information on it alone and what it is used for, side effects etc.? Thanks

Answer posted February 24, 2003

Carbidopa blocks the conversion of levodopa into dopamine in the body alone. It does not enter the brain (but levodopa does) and so all the dopamine produced is at the site where it is required. Carbidopa is very effective at blanking levodopa-induced nausea. It normally is not given without levodopa so I am unclear why your father was on it.

T.Lynch

Question 166

Answer

Question posted January 7, 2003

My wife started on Celance in mid-November. She has been building up the dosage and is now on 8x250mcg per day, aiming for 3 mg per day in another 4 weeks. Her condition has deteriorated dramatically since she began; the tremor is much more florid; she needs help in dressing, can no longer manage domestic tasks or go out to shops, gets stuck in one position, has pains in neck and upper arms and has panic attacks. We saw the consultant after she finished the starter pack and explained the problem, but were advised to continue the treatment, but it still seems to be doing more harm than good. What can you advise?

Answer posted February 24, 2003

Sometimes dopamine agonists (Celance, Requip, Mirapexin) can initially make the PD worse. As the dose increases this usually resolves and them the patients gets benefit. I would have expected your mother to be getting benefit at her present dose - it is disappointing she has not.

In this situation I would ensure there is no medical problems interfering with the medication absorption (e.g. constipation, medication after meals rather than on a empty stomach, urinary tract infection, chest infection, etc. etc.) If this fails I would alter / change Celance to a different medication and ensure the original diagnosis of PD is correct.

T. Lynch

Question 165

Answer

Question posted January 2, 2003

For medical history see question 144. update as follows: EMG and NCS:WNL (NCS equivalent to 16y.o.). Eyes: Visual field loss and light acceptance near stable (varies w/ use & exposure to brighter lighting), movement painful & focus slow. Gait & balance: unstable due to constant bilateral suprination and weakened quadriceps. Arms & legs: edema, high fatigability, increased muscle and joint pain, tremors, cramps, fasciculations & clonus(short time periods only)[increased dramatically when taking percoset for lumbar spasms]. Have had 4 MRI of brain & orbits: all WNL. No spinal MRI ever done. Current dx: Fibromyalgia, bilateral optic atrophy, REM hypoxemia, systemic & mild secondary pulmonary hypertension, cognitive problems NOS(near subcortical dementia) and obesity(BMI:39). NO dx or tx at this time to fully explain weakening or neuromuscular sx. Do you have any avenues of research I might follow? At one time, I thought sx might be leftovers from possible tardive parkinsonism [due to Avonex trial(Feb-Aug01)] or REM hypoxemia [prior to nasal cannula oxygen at night(May02! -pres)].

I realize this is a very complicated history, but I am being shotgunned (every clinic doing just their part) past the point of frustration. Myriad Thank You's in advance for your efforts on my behalf.

Answer posted February 24, 2003

Sorry for the delay again. You have an array of symptoms and complaints and investigations. You need one good dedicated physician to try to sort out the problem, explain it to you and instigate with you a management/treatment approach. It will take hard work to sort it but it can be done by you overtime.

T. Lynch

Question 164

Answer

Question posted December 27, 2002

When using Mirapexin will weight gain and puffiness be a side effect?

Answer posted February 24, 2003

Sorry for the delay. In general weight gain is not common with Mirapexin. The most common side effects can be sleepiness (rarely abrupt onset of sleep), lightheadedness, confusion and hallucinations especially in the elderly. Puffiness is not common.

T. Lynch

Question 163

Answer

Question posted December 25, 2002

My father suffers from PD and takes a whole host of natural remedies ( vitamins etc. ). His medicine cabinet looks like a pharmacy. I am concerned that any one of these could be affecting his symptoms and or having a negative effect on the drugs he takes ( L-dopa and / or Sinimet ? Plus others) Is there a site I can visit or a list I can print out that may give adverse affects of natural products - or do you believe there are any ?

Answer posted February 24, 2003

I am not an expert in alternative remedies. However in general I caution people about taking excess natural "remedies". For example, vitamin A and D can cause significant toxicity if taken to excess. Whenas there are no know side effects from high dose vitamins E or C or co-enzyme Q. You should be cautious about taking other "natural products" as many have pharmaceutical effects. Always check with your doctor/pharmacist first.

T. Lynch

Question 162

Answer

Question posted December 14, 2002

My dad has been diagnosed with PD since 1995. The treatment was started with Pacitane. The dosage of Pacitane was slowly raised from 1mg to 4mg per day, in a span of 4 years. In 2001 Selegiline 10 mg was introduced along with Pacitane.

In 2002 December, Syndopa 55mg three times a day was introduced along with Pacitane 2mg three times a day.After a week of this medication, he feels very restless, voilent tremors, slowness in all activities, breathlessness. Should he continue with this medication? He is also a patient of Cardiomyopathy(HOCM) for which he is taking Calaptine 40mg three times a day.

Are there any other medicines other than syndopa?

Thank You

Answer posted January 6, 2003

It is difficult to comment as the names for medication in India differ to Ireland. However I assume Pacitane is an anticholinergic (often good for tremor and drooling but can cause constipation, dry eyes and mouth and confusion). Selegeline is a monoamine oxidase-B irreversible inhibitor and can cause poor sleep, restlessness and occasionally vivid dreams or hallucinations. Syndopa I presume is levodopa and carbidopa and it replaces the missing dopamine within the brain. I do not know what Calaptine is. It is therefore difficult to say why your father developed breathlessness, restlsesness, tremor and slowness - his doctor should see him to make sure his cardiomyopathy is not causing the trouble. If it is not the cardiomyopathy then I would consider decreasing the Selegeline to 5mg daily as it can cause restlessness and also boost the effect of levodopa.

There are many other medications for PD - Sinemet, Madopar, Ropinirole, Pramipexole, Amantadine, Cabergoline, Pergolide, etc etc.

Dr Lynch

Question 161

Answer

Question posted December 12, 2002

Dr Lynch, I was diagnosed with PD immediately after my hip replacement surgery, when I noticed I could not beat an egg with my right hand and a slight tremor was developing. After some study of the disease, I've read that when onset of symptoms occur, it's probable that 70 percent or more of the available dopamine in the substantia nigra/corpus striatum is already gone. Is it possible to estimate how long it typically takes from the beginning of this dopamine loss to onset of symptoms? Several years earlier(1987) I had been sent for an MRI and EEG to diagnose symptoms involving slurred speech, and a "swelling sensation" in the head, but of course nothing organic reflected on the MRI or EEG. Is it possible this was connected with my eventual PD diagnosis in 1995, and that it might take several years for symptoms like tremor to develop?

Answer posted January 6, 2003

An interesting question that has taxed the minds of scientists over the last decade. Often we see people with PD who had preceding complaints (e.g. depression, loss of smell/taste, stiffness) years before the onset of symptoms of PD. It has been unclear whether there was a relationship between the two. Recently this questions has been studies by using sequential PET (positron emission tomography) imaging early in PD and calculating the rate of loss of dopamine neurons in the substantia nigra. It is then possible to estimate backwards when the process started. By these techniques a group of researchers in London (David Brooks) have estimated that the process starts less than 3 years before symptoms. It is unlikely therefore that your 1987 complaints are related to your later PD. Tremor could develop in time but not necessarily so.

Dr Lynch

Question 160

Answer

Question posted December 11, 2002

Please can you advise me on anything that might alleviate pain and stiffness in the face, neck and abdomen. My father is on Sinemet CR and cabergoline. We have tried adjusting doses but nothing seems to help. These symptoms can last for up to 3-4 hours. During this time he is completely switched off.

Answer posted December 16, 2002

"Off" dystonia is often painful muscle cramps of limbs, abdomen, chest but rarely face. It can be difficult to treat. It can respond to medication that "boosts" the effect of Sinemet, e.g. Selegeline (Eldepryl) or Entacapone (Comtess). Alternatively medication with a rapid onset can get rid of it quickly, e.g. Madopar Dispersible 62.5mg or Britajet (Apomorphine) subcutaneous injections. Somtimes Amantadine (Symmetrel) can ease dystonia or muscle relaxants (e.g. Valium Rivotril).

Dr. Lynch

Question 159

Answer

Question posted December 7, 2002

Helicobacter , Pernicious Anaemia , Parkinson's.

I know that Helicobacter can lead to b12 deficiency , and that this can lead to Parkinsonian type symptons, including eventually dementia . My sister has been diagnosed with Parkinson's and has rapidly reached this stage.

However, our father was treated for P.Anaemia, and the whole family have shown similiar symptoms to him . Two of us take B12 for relief , but not my sister.Because treatment for helicobacter is limited, it appears that its other effects are being fitted into familiar models, and because there is no specific test for the Parkinsonian condition this is a convenient description. Could Parkinson's and Pernicious Anaemia patients show similiar symptoms?

Answer posted December 16, 2002

Parkinson's disease results in tremor, stiffness, slowness, poor balance, freezing of gait and stooped posture. Pernicious anaemia is due to a lack of vitamin B12 and results in loss of sensation in hands and feet, pins and needles, poor balance, some leg stiffness and rarely memory impairment. Any neurologist worth their salt will be able to distinguish the two even allowing for some overlap.

Dr. Lynch

Question 158

Answer

Question posted November 26, 2002

my friend has this problem -

1. a feeling that there is something in the stomach
2. backache
3. a falling sensation (a imbalance)
4. indigestion
5. chest pain
6. belching a lot after he eats

Please could you help me doctor. What could be the problem with him?

Answer posted December 9 2002

Your friend has an array of symptoms affecting the gastrointestinal tract, back, chat and balance symtpoms. It is impossible to provide a cause for these symptoms without seeing the patient. He/she should be seen by his/her doctor who will be able to advise further.

Dr Lynch

Question 157

Answer

Question posted November 20, 2002

I'm 20 year old and I think I may have Parkinson disease or tremor. My hands and head tremors terrible. I stiffen myself up in public so the tremors wouldn't be apperant. I haven't been diagnosed because of money situation, but I would want to know a little bit more about young adults with tremors or teenagers. When I was younger the tremor wasn't as bad as now. I really need help but I'll wait until I get older to get help. Right now money is a big problem for me and going to get myself diagnosed is not an option. Please help me get some information. thank you.

Answer posted December 11 2002

There are many types of tremor.

1. Physiological tremor that we all have but becomes apparent when we are nervous/upset. It is a fine fast tremor present while holding something are reaching for things.

2. Familial essential tremor present again while holding objects or reaching, worse when anxious (physiological tremor exaggerates it) and eased by alcohol and holding the object with two hands.

3. Parkinson's tremor is different. It occurs at rest and is lessened by action or reaching.

At your age it is much more likely you have an exaggerated physiological tremor or a familial essential tremor (e.g. Katherine Hepburn, the movie actress, has this type of tremor). Your doctor should be able to sort out which you have.

T Lynch

Question 156

Answer

Question posted November 11, 2002

My grandfather was diagnosed with PD about 7 years ago. He had been taking Madopar(levodopa plus benserazide) for a few years. A few months ago, he got very sick, he lost about 10 kg due to severe diarrhea. Ever since, he was very week, he experienced hallucinations, loss of memory, confusion and loss of consciousness.He was then administrated Selegos, Madopar and also Tanakan (Gingko Biloba). After a few months, in Oktober, he started having very bad hallucinations, becoming even aggresive at night. The neurologist prescribed him another four drugs (all at once): Xanax, Finlepsin, Haloperidol and Doxepin. Now he doesn't have hallucinations any more, but he's sleepy all the time, he can hardly move (the PD symptoms have increased), he even didn't recognize my grandmother, and he doesn't seem to be able to hold liquids, especially at night. Asked about this, his neurologist said that we should administrate him the drugs as prescribed, and wait some more. But it's been alread! y 4 days since he's been taking them and they don't seem to do him good. he doesn't hallucinate, it's true, but he can't move and he's sleepy all the time. It seems we have to hire someone to take care of him, my grandmother is overwhelmed. I was thinking about giving up al least one of the 4 drugs, the one called XANAX seemed the most powerful. What do you think we should do? Thank you very much.

Answer posted December 23, 2002

Sorry for the delayed reply. PD always deteriorates when somebody gets an infection, e.g. diarrhoea, urine infection or chest infection. hallucinations and confusion are common when the PD patient is systemically unwell.

I would recommend using atypical neuroleptics (e.g. Quetapine, Olanzepine or Clozapine) for the hallucinations as these do not make the PD worse. Unfortunately Haloperidol does make PD symptoms worse. The drowsiness is probably due to a combination of the Haloperidol, Doxepine and Xanax. In this difficult clinical setting using as few medicaitons as possible is preferable, e.g. Madopar an atypical neuroleptic, and possibley an acetylcholinesterase inhibitor (e.g. Danepezil, Rivastigmine or Galantamine). The acetylcholinesterase inhibitors have been shown to improve memory function and behaviour in patients with complex parkinsonism.

T Lynch

Question 155

Answer

Question posted November 10, 2002

Hi.
I am suffering from PD past 7 years. I am In bad condition having pain in the leg and tiredness. I want to know what medication is required for it. I am taking SINDOPA as my doctor priscribed. and also i am taking the drug called PACITIN. But no relif. I want know is there any medicine which i can get it in India.

Answer posted December 23, 2002

Apologies for the delay. I presume Sindopa is levodopa/carbidopa combined.

Levodopa replaces the dopamine chemical lacking in the brain of people with PD. It usually results in improved mobility, less stiffness , less tremor and can relieve pain IF the pain is due to the PD. I do not know what Pacitin is. It is hard for me to comment further as it is unclear whether your leg pain is due to the PD - your doctor should be able to help you sort this out.

Dr Day Muthone is an expert in PD based in Mysore, India (tel: 91-821-513036)

T Lynch

Question 154

Answer

Question posted October 29, 2002

Please can you tell me where I can obtain a CT scan (full body scan) here in the UK - I have to pay but don't know where best to go - P. S I have spent a great deal of time reading your site in my research - Thank you for your contribution and energy spent on this site - you have been more than helpful

Answer posted November 5, 2002

I am not too clear how to advise you. The NHS is available to all so if your doctor recommends you have a CT body scan it should be easy to get it. I do not know about private institutions or scanning availability in the UK. I think you would be best if you spoke to your GP.

Dr. Lynch

Question 153

Answer

Question posted October 9, 2002

Hi.
I have a 40 year old friend who is diagnosed with idiopathic PD, he was given the drug Sinemet Plus. He was commenced on 4 tablets twice a day but started complaining of nausea and vomiting. Why was he vomiting?

Answer posted October 16, 2002

Sinemet is a combination of Ldopa and carbidopa. Ldopa is converted to dopamine in the body by a decarboylase enzyme - carbidopa blocks this enzyme in the body but not in the brain. Thus all the Ldopa is converted to brain dopamine where it is required. However dopamine can result in nausea and vomiting especially if some of the decarboylase enzyme is active in the body. This nausea/vomiting can be blocked by the addition of extra 25mg carbidopa (DuPont) or Motilium 10mg before each Sinemet.

Dr. Lynch

Question 152

Answer

Question posted September 14, 2002

I am writing on the behalf of my father, he is 48 yrs old . He has high blood pressure which sometimes shoots up. Four yrs back his hand started shaking , which was diagnosed as writers cramp. He is an government officer. Now from last year he started shaking his head unknowingly, but if some one remarks on it he is able to control it. It happens sometimes when he is reading something.

I need your suggestion: is this a symptom of Parkinson's or not? If yes, is it at an early stage or more advanced, and it is curable or controllable?

Answer posted October 16, 2002

Sorry for the delayed reply. Head and hand tremor usually occur in benign essential tremor (ET) - it is less common to get head tremor in Parkinson's disease. In ET the hand tremor is present with action and usually not when the hand/arm is at rest, i.e. walking. PD tremor is present at rest and less so with action. ET tremor is eased by alcohol, PD tremor less so.

Dr Lynch

Question 151

Answer

Question posted September 11, 2002

have read of the relationship being examined between tension and prostatitis. I have had a prostate D E. and GP found nno problem . However, I note that when I am trying to control my bladder while waiting for a vacant toilet etc my tremor comes to the fore. Is there a link in that occurrence or is it a matter of brain failure to effectively control the sphincter muscles subconsciously/? Thank you, I enjoy reading your responses.

Answer posted October 16 2002

I am unclear whether you have simply a tremor or a diagnosis of PD. However PD tremor usually worsens with tension, stress, physical and mental activity - indeed most forms of tremors do worsen with stress. Tremors worsen in stressful situations not because of brain failure but simply that the brain is activiated and there is "spillover" of activity into the tremor-producing areas of the brain.

Dr Lynch