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Your most recent questions are here, in reverse chronological order, with their answers posted
to this page as soon as they are received. To access Questions and Answers 1-130, click on the
"Archived Answers" links to the left.
Once again, please note that, in some instances, where Dr. Lynch would not deem it
appropriate to comment on a particular aspect of your treatment, he will refer you back to your
specialist or GP for diagnosis and/or treatment.
After visiting my neurologist yesterday, he suggested using Botox shots to relax the muscles in my neck. For the last couple of years my head has gradully pulled to the left and the tremors have become worse. I would like to learn the pros and cons in having this done.
I'm a very active person and chose to live a normal life. This is getting harder as the months go by. I now entertain myself with over all tremors, involuntary movements, falling (breaking two ribs). However the most irritating effect for me right now is my head pulling to my shoulder and the tremors. I tell myself the longer I can put off any treatment the better off I'll be but I just don't know.
Also can you refer me to a parkinsons specialist in my area, Boise, Idaho?
Thanks for your time.
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
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?
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.
I was wandering if I took a couple of Xanex, how long would they stay in my system.
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
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
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?
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
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.
"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
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?
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
my friend has this problem -
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
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.
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
My Uncle has had PD for the past ten years I know he takes Madopar but I am not sure what else. however in the last six months every afternoon he has suffered from lose of strength and break out in a sweat on his hands and face, this normally lasts a couple of hours and then his strength returns. He has had some tests done and the doctors can not find anything other than PD wrong with him. Is this a common side effect, could it be a reaction to medication, what is the best thing to do?
Thank you
What would be your opinion on the treatment of Multiple Systems Atrophy? At present the patient is taking 5 sinemet per day and 1 mirapexin 3 times a day.
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.
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
Hi. 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
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
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
Hi. 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
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?
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
have read of the relartionship 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.
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
My sister just got numbness down the right hand side of her body, she couldn't feel anything. Also she is getting weird headaches ever so often. The numbness is gone now but she doesn't feel 100%. What do you think it is?
Sorry for the delayed reply. I will assume your sister is in her 20s like
you. Numbness down one side of the body usually indicates interference with
the sensory pathways (from skin to nerve to spinal cord to brain) in the
body. She should see her GP who may recommend a referral to a neurologist -
we now have 12 consultant neurologists in the public sector in Ireland!!.
Dr Lynch
In 1992 I had an MRI which my then Neurologist did not discuss with me. I am on my 6th Neuro as they come and go where I live. My question is why my tremor becomes much worse when tensing the bladder control muscles when I get a sudden and urgent sensation to urinate. I have had prostate checked after passing blood earlier this year. For the past couple of years I have beeen rather uncomfortable initially in morning but once the discomfort in the right buttock passes , I can feel near normal again. What is relationship between lower back discomfort and PD if any? Thank you.
PD tremor often gets worse when the automatic centre for movement (basal
ganglia) in the brain is activated. Most physical and mental activity -
thinking, walking, talking, micturition, etc. etc. increases tremor as the
basal ganglia is activated.
PD can be associated with pain especially as Sinemet/Madopar wears off -
usually the pain is down the same side as where the PD symptoms begin.
Sometimes patients get cramping, abdominal, chest, back, rectal or vaginal
pain as part of wearing off. Usually a dispersible/dissolvable Ldopa pill
(e.g. Madopar Dispersible 62.5mg) first thing before getting out of bed
blocks/stops the pain.
Dr Lynch
Dear Dr Lynch , I was recently prescribed Sinemet 275mg 3 x a day which helped improve my condition (question 133) . The low dose of Sinemet Plus had no effect . My questions are:
With all the information I have found on your website it would appear that it is in fact PD .
Would you also be able to put me in contact with anybody of my age (34) who also has PD as talking helps me a great deal .
Thanks once again for your invaluable help .
Sorry for the delayed replies. I will answer both questions 139 and 148.
1. Sinemet 275mg 3/day is a moderate to high dose of levodopa. You could
increase to 4/day but I think extending the benefit of the Sinemet by the
addition of Selegeline and/or Entacapone would be preferable. In addition
taking a siesta early afternoon to recharge the batteries may help to boost
the Sinemet effect.
2. Sleep is commonly interrupted in PD. Using a low dose tricyclic
antidepressant (e.g. Amitriptyline 10mg or 25mg) is preferable to adding
more Sinemet overnight. Being off levodopa overnight in some may allow theh
dopamine system to reset itself.
3. Rest tremor is the hardest symptom to treat - it usually reappears with
excitement or stress. I often get people to use low dose Diazepam (Valium)
e.g. 2mg one to one and a half hours before a stressful/exciting event (e.g.
public speaking). Diazepam is a good muscle relaxant and amyiolytic that
can suppress tremor. The dose can be adjusted to your needs and usually
people with PD do not get addicted as they do not have the addictive
neurochemical, dopamine, in the brain.
4. You have rest tremor, stiffness and slowness - 3 of the 6 cardinal
features of PD. Also, your symptoms responded to levodopa. Therefore I
share your strong suspicion that you may have early PD (young onset PD).
There are many people of your age with PD unfortunately. I am sure the PALS
group could put you in touch with someone of your age with PD - if not I
would be happy to ask someone with YOPD. It is important to be aware that
our treatments at present will be surpassed over the next few years,
hopefully with agents that can reverse or stop the disease.
Dr Lynch
There is quite a stir througout the Parkinson's community, that being us the Parkinson's patients and not the organizations, concerning initial diagnosis and surgical produres such as DBS.
Many of us are told that the only "positive" way to diagnose Parkinson's is via a brain autopsy
Recent events involving our dear friend Deborah Setzer are prompting us, the patients to demand a change in diagnosis as well as verification of Parkinson's prior to surgeries such as DBS. Deborah was diagnosed nearly 5 years ago, had DBS, took all the brain altering drugs, and today she has been told she never had Parkinson's and never should have had DBS without the f-dopa brain scan prior.
A Positron emission tomography (PET) scan of the brain is a research tool and is not used in standard medical practice to see if there is a deficiency in dopamine (a Fluorodopa (F-dopa) PET scan). Conditions other than PD may have a dopamine deficiency but, the pattern of loss may help differentiate these. Because of the cost ($2300) and inaccessibility for most neurologists, PET scans are usually not performed.
My questions are:
Thank you for your time.
Sorry for the delayed reply. It is difficult for me to reply to these
questions as we are not inserting DBS here in Ireland yet and hence we have
not had to deal with these issues. Secondly we have one PET scanner in
Ireland that is not doing flurodopa PET yet. However PD is still primarily
a clinical diagnosis - it can be supported by flurodopa PET or a
dopamineamino transporter spect. (Tissue diagnosis at autopsy is the
definitive method of diagnosis). Therefore in answer to your questions -
1. Most institutions do not routinely perform a flurodopa PET before DBS
surgery. Dr. Lynch
From a physician-psychiatrist:
I have recently begun treating a 44 year old woman with "benign essential tremor." Two neurologists have seen her and can offer little treatment. She is trying inderal and others without result. I treat her for longstanding depression and I have been following Dr. Glenmullen's ideas about Prozac Backlash. If the serotonergics which she has been on for 15 years have contributed to the tremor what possible alternative anti-depressant therapy might I consider. Thank you.
Sorry for the delayed response. There is a nice review of essential tremor
in the NEJM 2002 by Elan Louis MD including pathogenesis and treatment
options. The bottom line is that bad ET is difficult to treat. Propranolol
can sometimes help. Mysoline is often more effective but has to be titrated
very slowly over months and often is not tolerated. If there is a strong
family history of ET I suspect discontinuing an SSRI will be of little help.
I see more ET-like tremor with Lithium and sodium valporate. Perhaps an old
fashioned tricyclic antidepressant might be work trying as the
anticholinergic side effect might help the tremor.
Dr Lynch
My father was diagnosed with a familial tremor 12 years ago by a neurologist. Familial tremors run in our family. We sought a second opinion by another neurologist who diagnosed him with Parkinson's Disease. This neurologist began medicating him with Sinimet and other Parkinson's medication. We sought a third opinion by another neurologist who also diagnosed him with Parkinson's disease. The medication never relieved the tremor in his right hand, therefore, the neurologist continued to increase the medication. After eight years, my father began to have severe tremors in both hands, arms, legs, face, and internally. He also developed blood clots, ulcers, very low blood pressure and his eyes bulge out. After several trips to the emergency room, the emergency room physician advised us to discontinue his medication. We sought the help of a neurologist to began discontinuing the medication and he is actually doing better without the medication. He
no longer takes any PD medication. We went to a university hospital that specializes in deep brain stiumlation. They would not do the surgery because one doctor says he does not have PD, but, he doesn't know what he has. His tremors are severe and so is his fatigue. He needs help, but, we don't know what to do or where to go. Please help.
I am a 43 y.o. male, not an athlete, but also not deconditioned. Over the period of the last 3.5 years, sx (symptoms) of visual loss, cognitive problems, & neuro-muscular problems have appeared. DECEMBER 98- blurred lower visual field(LVF) OD in apparent Optic neuritis(papilladema, no cupping); tx: patching. MARCH 99: loss of LVF OD, poor light acceptance and blurs in UVF(optic atrophy/no papilladema); tx: oral corticosteroids(CS). JULY 99-slow progressive losses OD and rapid progressive losses OS(3 weeks from floaters to near total loss, severe anemia, dx as NA AION; tx: IV and 3 mo. 40mg daily oral CS, iron and steroid support. OCTOBER 99-bone marrow biopsy showed leukoerythroblastic smears in peripheral blood (LE). AUGUST 00-hemorrhoid surgery, mild hypertension/hyperlipidity. SEPTEMBER 00-slow worsening OU from CS recovery level; tx: IV and 1 mo. 60mg daily oral CS. FEBRUARY 01- slight worsening OS from CS recovery !
level, LE and anemia cleared; tx: 6 mo. course of Avonex. MARCH 01- tremors & fasciculation rt arm. APRIL 01-bilateral tremors, 5 of 18 FM tender points. JUNE 01-muscular weakening (MW) noted(decreased weight handling, increased fatigability),constant suprination rt foot, borderline sub-cortical dementia(CP), mild GERD. AUGUST 01- intermittent myoclonus (IM) rt wrist. NOVEMBER 01- tonsillectomy/UPPP for chronic tonsillitis/mild sleep apnea, visual loss dx as bilateral optic atrophy. DECEMBER 01- constant suprination lt foot. FEBRUARY-MARCH 02- restricted ROM(weak pronation in feet, no suprination in wrists & restricted active/pain-limited passive ROM for all joints); tx: constant wear bilateral wrist & ankle braces prescribed, physical/occupational therapy (> 6X/wk). MAY02- pulmonary hypertension, REM hypoxemia, aortic/tricuspid regurgitation, systemic IM & tremors, cogwheel effect legs & arms, continued MW, edema & itching, 18 of 18 FM tender points, TMJD & worsening GERD & IBS; tx: 2 l/min supp!
lemental oxygen, Zocor & 50mg Elavil nightly, CTM, Zyrtec, Celebrex, T
enormin, HCTZ, Aciphex, Zantac & Simethicone daily, and Immodium, Surfak, Ibuprofen, Vicadin & Flexaril PRN. JUNE 02- lessening progression of MW & CP, near-stability of visual field loss with varying acuity throughout the day. I have had 4 MRIs (latest in MAY02, all clean), 5 LPs (latest in DEC 01, slightly elevated opening pressure on all but last), pulmonary & cardiac exercise studies, 4 sleep studies, 3 Neuro-psych. batteries (showing progressive problems in manual dexterity, multi-processing, processing speed & attention/concentration) & innumerable blood & urine tests(including LHON screening, with no definitive clinical markers). EMG scheduled for 10 SEPTEMBER 02.
Sorry for the delay in replying. I am unclear what the question is as your
history is highly complex. I assume you have been given a diagnosis and are
attending a neurologist(s).
Dr Lynch
I wonder if you can help. I am on a dose of 6mg of Cabaser once a day and 1.25 mg of Zelapar once a day and have been taking these drugs for about a year and a half.
I am now suffering with quite severe abdominal pains, which extend round my kidney area and round the front of my lower abdomen and is painful when sitting.
I have had a ultra sound examination which has found gall stones, but the pain I am suffering is not typical of Gall Stones.
Have you any knowledge of any one who has suffers this with this type of problem and the cause was the Parkinson Disease drugs.
My Doctor is working on the problem but any help would be very useful
From an Occupational Therapist: I am currently working with a woman who has a diagnosis of profound MR and CP, and it was recently discovered that there have been ischemic changes in her brain. She has high tone in both her arms, the right more so than the left. Someone suggested that the use of BOTOX might help with the atrophy. However the only documentation I find is the use of it primarily with face lifts. Is there any information for the use of BOTOX under these circumstances, and do you have any recommendations?
Thank you.
Botox was first used to treat eye squints in the 1980s. Subsequently it has
been used for treatment of dystonia and more recently spasticity. It is
commonly used in patients with CP to release spasticity and/or contractures.
It can be very helpful in this setting but may need to be repeated every 3-4
months. Botulinum toxin has been a marvelous development for neurological
disorders and its use for wrinkles is only of recent development.
T Lynch
Is there any relationship, between Agent Orange and PD. I have read alot of articles on PD caused by exposure to pesticides. I was diagnosed with PD when I was 24 years old. There is no history of PD in my family and the cause of my PD is unknown. My father was exposed to Agent Orange in Vietnam. I was then conceived shortly after his return to the states. I find it highly coincidental that I came down with PD and none of my older siblings have any medical problems. I thank you for your time and any info that you can provide. Again, thanks
I don't know of reports of Agent Orange and PD. PD onset at age 24 is often
due to autosomal recessive inherited PD, i.e. parents are carriers but not
affected and the children have a 1 in 4 risk of getting disease. Mutations
in the gene Parkin are commonly found in people with onset of PD before age
30. I do not know if a diagnostic Parkin gene test is available in the USA.
It is not available in Ireland yet.
T Lynch
I am a 39 year old female and have noticed turning to the left of second and third toes on both legs. There were lot of tremors in my legs before this happened. Also the fourth toe in both legs has gone under the third toes. I saw two neurologists who did not think I had PD. But I read that PD causes turning of toes as an early symptom in young cases. My mother was diagnosed with Parkinson's at age 40. Could you please let me know if it is PD or what may be the cause of it. I take Celexa for depression. Could it be side effect of this? Waiting for your reply. Thanks
I do not know what Celexa is - do you know the pharmacological name?
Toe crunching or turning can occur in young onset PD and also as a
side-effect of L-dopa for PD (wearing off or early morning dystonia).
Usually young onset PD is an autosomal recessive disorder, i.e. affects
siblings but not parents (they are carriers but are not affected by the
disease).
T Lynch
Dear Dr Lynch , thanks for answering my previous questions (133) . I recently had my dose of Sinemet Plus increased to 2x 125mg 3x a day which helped me a great deal . When I went back to my GP I was then prescribed Sinemet 275mg , 1 tablet 3x a day .After 3 hours of taking this I can feel my symptoms coming back which makes it impossible to get a good night's sleep .
Sorry for the delayed replies. I will answer both questions 139 and 148.
1. Sinemet 275mg 3/day is a moderate to high dose of levodopa. You could
increase to 4/day but I think extending the benefit of the Sinemet by the
addition of Selegeline and/or Entacapone would be preferable. In addition
taking a siesta early afternoon to recharge the batteries may help to boost
the Sinemet effect.
2. Sleep is commonly interrupted in PD. Using a low dose tricyclic
antidepressant (e.g. Amitriptyline 10mg or 25mg) is preferable to adding
more Sinemet overnight. Being off levodopa overnight in some may allow theh
dopamine system to reset itself.
3. Rest tremor is the hardest symptom to treat - it usually reappears with
excitement or stress. I often get people to use low dose Diazepam (Valium)
e.g. 2mg one to one and a half hours before a stressful/exciting event (e.g.
public speaking). Diazepam is a good muscle relaxant and amyiolytic that
can suppress tremor. The dose can be adjusted to your needs and usually
people with PD do not get addicted as they do not have the addictive
neurochemical, dopamine, in the brain.
4. You have rest tremor, stiffness and slowness - 3 of the 6 cardinal
features of PD. Also, your symptoms responded to levodopa. Therefore I
share your strong suspicion that you may have early PD (young onset PD).
There are many people of your age with PD unfortunately. I am sure the PALS
group could put you in touch with someone of your age with PD - if not I
would be happy to ask someone with YOPD. It is important to be aware that
our treatments at present will be surpassed over the next few years,
hopefully with agents that can reverse or stop the disease.
Dr Lynch
I would like to know what information you can give me on the connection to dysconjugate gaze and PD, & if Botox injections would correct the eye disorder? My sister 's doctor told her about the Botox injections for her eye condition and we can't find anything on it ... please help.
PD is not usually associated with problems with eye movement. Atypical
parkinsonism (e.g. progressive supranuclear palsy) is commonly associated
with poor eye movements - initially down gaze followed by horizontal gaze.
Sometimes a latent strabismus (squint, lazy eye) can appear in late life as
our eye muscle fatigue slightly - this can result in dysconjugate gaze.
Botulinium toxin (Botox) injection was first used to correct malaligned eyes
in the 1980's - it is quite a successful procedure in good hands but has to
be repeated every 3-4 months as the Botox wears off.
Dr. Lynch
Do you have to pay for Sinemet and Requip tablets in this country (Ireland)?
Parkinson's disease qualifies for a long term disability card that entitles
people to free medication once the prescription is written on the long term
disability card. You can apply for the card at your local health board.
Dr. T. Lynch
I am a 26 year old female. About 1 month ago I woke up and was not able to put pressure on my right leg. It was extremely weak. When I tried to walk on it holding on to something my right foot foot turned. I had excruciating pain from my side under my rib cage down my right cheak into my right leg. I was hospitalized and had a lumbar MRI. Everything came back normal and they discharged me with a walker. Recently the right foot turns in more and I have tingling in my right and left leg. Also I have slight cramping in my right leg and ankle area. I have had both an MRI of my brain and my spine and all came back pretty normal. I went to the ER over the weekend because the tingling sensations and slight numbness had gotten worse. The neurologist on call told me he wanted me to get a second opinion it could possibly be foot inversion dystonia.
In December of 1999 I was in a car accident and had traumatic brain injury which caused me neurological disorders, such as:
Also, my mother has multiple sclerosis. My questions to you are:
I thank you for taking the time to read this, and information that you can provide me with would be greatly appreciated.
Thank You,
Dystonia is a twisting movement or posture so your symptoms could be
dystonia-related. It is unlikely to be related to your mother's MS as
dystonia is only rarely associated with MS and your MRI brain practically
excludes MS as it was normal. Sometimes trauma can bring on dystonia - this
is usually trauma to a limb rather than the brain. However occasionally
brain trauma can result in a shake or dystonia - it is hard to comment
further without seeing the right foot twisting. You should ask these same
questions of your doctor to see if he/she can answer them for you.
Dr. T. Lynch
My sister is currently taking Sinemet CR and Requip for her Parkinson's. She is constantly adjusting the dosage trying to decrease off times and on two occasions has required hospitalization due to taking too much Sinemet.( 50/200 x 6 plus 6-7 1/2 mg Requip) Her Parkinson's overall is mild but she attributes all her discomforts to Parkinson's thus looks primarily to these medications for relief. During this last 6 week period of increased medication, she experienced a great deal of stomach difficulties, constipation, some confusion and hopelessness. Now that her dosage is down to 4 x 50/200 CR these symptoms are slowing and decreasing, but she complains of acute pains which can best be described as a burning sensation especially in the groin area and stomach bloating which generally begin two hours after taking her Sinemet. She attributes this burning to her Sinemet not "kicking in", thus she looks for relief from the next dose...cheating if necessary. Her skin is also hypersensitive to touch. No one seems to be able to make much sense of all of it. She has had a complete diagnostic work up over the past year. Currently they are giving her liquid antacid with her Sinemet to see if this might help. She does not complain so much about the off time stiffness, but this burning sensation bothers her more when she sits or lays down. She describes it as being an overwhelming pain. Zanex has been used to deal with these episodes. Last year, stomach inflamation/irration was seen on the scope and seemed to be effectively treated with Aciflex and decreasing her Sinemet. It seems like the medication's side effects are worse than the disease. So many questions...such a complex frustrating disease.
Complex is an understatement. After 5 years of the disease the dose of
Sinemet is high. Sometimes people keep increasing the dose to stay "on" but
then run into trouble later because of an array of side-effects including
confusion, hallucinations, weaning off, dyskinesias, dystonia, etc. The
burning sensation may be a side-effect but stress and anxiety probably are
aggravating the symptoms. The series of problems are not easy to resolve.
What I do in this setting is admit the patient to hospital - treat any
medical problem (eg. constipation, urine infection) adjust medication (e.g.
add Entacapone and Selegeline to boost Sinemet while lowering the Sinemet
dose, change CR to regular Sinemet, take Sinemet on an empty stomach if
tolerated, etc. etc.), improve sleep with low dose tricyclic antidepressant
(e.g. Amitriptyline), treat anxiety and depression and provide an exercise
regime, i.e. a lot of hard work by the patient and staff.
Dr. T. Lynch
Follow-up to Question #132
Thank you for your response. I live in Atlanta. After another MRI of my brain and neck, my doctor is having me see a IQ specialist. My MRIs came back fine. If I don't have Parkinson's I'll take everyone out for a night on the town! I have almost every symptom in the book "When Parkinson's Strikes Early" (I believe you have a foreword in it).
Anyways, after much arguing! My doctor - Dr. Alan Harris- said he'll refer me to a Dr. Watts of Emory in Atlanta. Any other suggestions?
Dr Ray Watts in Atlanta is an excellent neurologist with a particular
expertise in movement disorders. You are in good hands.
T Lynch
In October 2001, I started having problems with my neck (i.e. stiffness) and
my doctor had an idea I had a trapped nerve as physiotherapy had a very limited
effect. Since then my symptoms now include a kind of shake whilst
resting
which goes away with movement, my left side is stiff all the time, I have
a
certain degree of dificulty walking because of the stiffness and I am very
slow moving on my left hand side. My neurologist suspected I might have a
dopamine dystonia, for which I was prescribed Sinemet Plus which has not
had
any effect. After reading all the infomation I possibly could find to do
with Parkinson's I find myself confused. Yes, its true that my symptoms
are
what you could class as classic Parkinson's but at the age of 34 I am way
to
young to have this disease. If the dose of Sinemet was increased and my
symptoms eased, would you say that a diagnosis of Parkinson's could be
made, bearing in mind my age? Unfortunately PD can affect young people even before 40, 30 and rarely 20.
PD can cause stiffness, slowness, tremor, stooped posture, poor balance and
freezing of gait. Your symptoms match some of these "classic" signs and
symptoms. It is possible to diagnose PD in someone of your age by the
clinical history and examination. Occasionally if there is some confusion
regarding the diagnosis a PET (flurodopa) scan can confirm the diagnosis. A
flurodopa PET shows decreased uptake of flurodopa (dopamine) in the basal
ganglia (automatic centre for movement in the brain) of patients with PD.
Hopefully you will turn out not to have PD but your complaints certainly
warrant careful investigation.
T Lynch
I am 33 and suspect Parkinson's - I guess I am
looking for any comment you might have or suggestion.
I have ached for at least 2-3 years. But over the last 2-4 months I have
had these things happen:
Anyways - I am being tested with an MRI for Dysphasia and Mynoclos (Restless
Legs).
Here's the concern: it seems like things are happening faster - or maybe I'm
just noticing them. I feel stupid - I've always felt old! I thought all
33
year olds ached!
How do I find a good neurologist and what if they don't or won't diagnose
me. I have had 4 MRIs and 2 CAT scans just over the past 2 years because
of aches and pains and stiffness in my joints. They can't find anything.
I think my family thinks I'm crazy! What would you tell a young lady
like
me??
It is hard to comment on all your symptoms with a neurological examination.
There are 100s of excellent neurologists in the states with expertise in PD.
I could give you a list of neurologists trained in movement disorders in
your state if you wish. Without seeing a neurologist the problem may remain
clouded as many things can cause your array of symptoms.
T Lynch
My Dad is starting to get mixed up and confused could this be the start
of
Alzheimer's disease? Is it connected to Parkinson's after a length of time?
Confusion and memory impairment occurs in aproximately 1/3 of PD patients.
It can often happen due to infections (urine, chest), constipation, other
medical illness or as a consequence of the medication (e.g. Artane,
Cogentin, etc). Sometimes it can occur because of progression of the
disease to diffuse Lewy body disease or associated Alzheimer's disease.
Your doctor will be able to tease out the likeliest cause in your father's
case.
T Lynch
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