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Unilateral atypical Parkinsons?

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Posted 12/19/2011 12:11 PM (GMT 0)
I have a few questions, but first I must explain my condition. I am now 62 years old. Seven years ago I started experiencing weakness and shakiness in my left leg. After a few months it progressed to the left hand and arm, but in neither case was there any resting tremor.  I went to neurologist No. 1, who said that it MAY be PD, but to exclude essential tremor I was to take beta blockers. That didn't do much good.

The symptoms became worse, but on the left side only, leaving the right side entirely unaffected. Then I went to a neurosurgeon who sent me for an MRI scan. Brain OK, but stenosis was found in two places which MIGHT account for the symptoms (he said), but not serious enough to risk surgery.

Three years later found me at neurologist No. 2, who said yes, definitely PD, but it was "unilateral PD". I asked him if I should take medication, and he said I could if I wanted to (of course I didn't want to!). As time went on the symptoms became worse, and 6 months ago I went to neurologist No. 3. He said he had never seen a case like mine and diagnosed "atypical Parkinson's".  He prescribed Sinemet 25/250 once 3X per day.

My symptoms are now leg drag, inability to type with the left hand, essential tremor in the left hand hand and muscular rugidity in the left side, especially during cold weather and when I'm stressed. Still no resting tremor whatsoever. I also have pins and needles in the soles of both feet. The right side (fortunately my strong side) is still entirely unaffected.  This is a very weird feeling, like having two separate bodies. The condition does not stop me from doing what I always have done: 20-mile cycle rides, walking for an hour and weight training, although I have become slower and clumsier. I don't like going to shopping malls because I tend to stagger and bump into things.

Anyway, I started taking the Sinemet as prescribed. After two weeks it started doing some good:  walking started feeling normal and I could almost start using the left hand again when typing. However, the side-effects of the Sinemet also started: nausea, vomiting, fatigue and a sort of spaced-out, drugged sensation.  I called the neorologist and he was very abrupt: "Sinemet is all we can give you. The next step is brain surgery". Not very helpful, so I won't consult him again.

I gradually stopped the Sinemet and the symptoms returned, but I regained my energy and felt pretty good again. I'd like to do something about the symptoms because friends are starting to ask what's wrong with my leg (I haven't told anyone about my condition). My questions are: 1) Would I get better results from a lower dose of Sinemet, say 25/100 2X per day, building up to 3 or 4X per day? 2) Does anyone out there have "unilateral PD"? 3)What is "atypical Parkinson's" or is this just a handy label for not being willing to admit that you don't know what's going on?

I'd appreciate any thoughts. All the best.

Posted 6/4/2012 6:35 AM (GMT 0)
Hello LLew, it's been 6 months since your post, so I hope you get to read this. I too have a long frustrating story, but not as frustrating as yours. I am a 64 year old female from Australia. After 12 months or so with a unilateral left side hand and leg tremor plus my left arm would not swing when walking, I was diagnosed with Mild PD. I had appropriate MRIs and other tests including nerve conduction tests. I also had a left side ulnar neuropathy which confused issues a bit as well. I was put on low dose Artane (not a dopamine replacement) and also low dose Lovan antidepressant. I persisted for a month with the awful side effects - cough, gagging, dry retching, dry mouth, dizziness, tiredness and spaced out. Did not feel like doing much. I halved the dosage of Artane a couple of weeks before seeing the neurologist again.

My neurologist was sympathetic, but after some more analysis, he tells me he is now 50% divided in his diagnosis. I might have PD or I might have Atypical Essential Tremor. I am to go back if and when something changes. I will be getting a second opinion in due course.

I am now off all medication. The hand tremor and mild leg tremors are a little worse and annoying but not unmanageable. I have no pain fortunately. And yes, stress - even very minor - makes the tremor worse. I am a lay person but have done a lot of research into medical/neurological literature. A lot of it, I admit, is not easy to understand fully, but I am not lacking intelligence and I am fast coming to the conclusion that, yes! neurologists assign labels to sets of symptoms.

What am I doing to help myself? Exercise - weights, aerobic, pilates, lawn bowls, gardening. Also QiGong and meditation daily. Taking a variety of vitamins and minerals (standard dosages), Bowen Therapy, Hydration via filtered water and homeopathic drops (called Aquas), trying not to get too tired, ramping up my diet with best fresh food possible, cutting down on "white foods". I laugh a lot and sing to my vegie garden. Staying positive. I feel fabulous - better than I have in years. I am doing the best to help myself, and if in the future, it evolves that I have progressive PD, and I start to fall in a heap - I will go down kicking and screaming.

There's a lot of good info out there on the internet. Try Parkinsons Recovery website if you have not already done so.

Good luck and cheers
Posted 6/4/2012 9:02 AM (GMT 0)

Hello Bella-donna, I really appreciate your reply. We seem to have very much the same symtoms, and we also live in the same hemisphere: I'm in South Africa. Since my post six months ago I started taking 2 x Sinemet 25/100 a day which my GP was willing to prescribe for me. This was after stopping the Sinemet 250 which the neurologist prescribed and which made me feel so sick. After a few months on the lower dose the side-effects started disappearing, namely the nausea and the drugged feeling. For the first month I took three Sinemet tablets a day, but later cut down to two, which made no difference at all.  I'm generally now a lot steadier and I walk almost normally, so much so that I can hide my condition. The intention tremour is still present and I still can't use the left hand for typing. The terrible fatigue which I was experiencing some months ago has also disappeared.

My condition is merely an irritation which I can live with, but of course there's always the fear that it will progess to full-blown PD. I sometimes wonder if I do in fact have PD, especially since the symptoms started more than seven years ago and haven't really become much worse. I've always been able to put on my jeans without falling over, I don't smash crockery and this year I painted the bathroom, toilet and passage, ceilings included, without mishap. I plan to stop the Sinemet altogether for a few months to see if there's any difference. If my condition gets worse it'll mean that I need the extra dopamine and therefore probably do have PD. If there's no difference, perhaps I can hope that there's some other reason for the symptoms which might spontaneously disappear (I should be that lucky!).

I hope that your symptoms will stablise as mine seem to have done. Keep up the exercising, and also get yourself one of those big floppy gym balls and do exercises on it that promote balance (e.g. sit on the ball and raise one knee towards your chest. Do 2 x 10 reps with each leg). 

All the best, and let's hear from you again.

Llew 

Posted 6/4/2012 3:37 PM (GMT 0)
Llew and Bella

Are you seeing general neuro's or movement disorder specialists? MDS neuro's specialize in PD and the like. Very important. My first neuro 4 years ago was a general neuro. Gave me sinemet. After reading the side effects I did not want to take sinemet. Read about Azilect. It has  been shown to slow the progression and help with symptoms. Neuro would not prescribe. Said it is too expensive. Went to a MDS. He agreed to go with Azilect and save sinemet for later. I started Azilect December 2008 and experience very little progression. One Artane  a day helps with tremors. My point is that seeing a MDS is important.

I started PD symptoms November 2007 after abdominal surgery that went bad. I noticed symptoms as soon as I got home. Now 68 YO.

My primary exercise is playing ping pong against myself. After  playing for a couple weeks I hit the ball with my right hand and returned it with my left! I had never held a paddle in my left hand. I am right handed and my symptoms are right side. I am now as good or better left handed. I switch the paddle back and forth while playing.

Dan

Posted 6/4/2012 11:28 PM (GMT 0)
Hello Llew and Dan,
Good to hear from you Dan, and thanks for your advice. As it turns out, I have been on the Public Hospital Waiting List year to see a neurologist who is also a movement disorder specialist. I need a second opinion. My current neurologist is a kind and compassionate man but I fear is a bit out of date in some respects. If it takes too long in the public system to see this MDS/neurologist, I will make an appointment privately. There is often a 3 month waiting list even for a private neurologist in the State I live in.

Whether I have PD or Atypical ET remains to be seen, but I do know that misdiagnosis is common between these conditions. Except for the hand tremor which becomes quite severe and annoying at time, I feel fantastically well. So some of the things I am doing to help myself are working well. If the tremor is keeping me awake, I find that if I just breathe gently through the severe tremor, it tends to "burn itself out" fairly quickly and I can get to sleep. Keeping busy through the day is also a good fix.

LLew, you are right about the importance of balance exercises. My old gym ball is in storage at the moment, but I have come up with lots of alternatives, and my balance has never been so good since I was a child.

As a matter of interest, if you have not already done so, please check out SWEDDs on Google and also PubMed. There is a 2010 full text pdf file available titled SWEDD-UK Meeting Report. Worth a read! My neurologist had never heard of SWEDDs, which made me realise he was out of date.

Scientific research into Neurological diseases and symptoms is so confusing, incomplete and blurred, I almost feel sorry for neurologists. This area of medicine has a long long way to go. I suspect the only ones making a killing out of it are the big pharmaceuticals.

Keep in touch - meeting you two people via this forum is one of the best things to happen to me in my journey to recovery.
Posted 6/5/2012 7:40 AM (GMT 0)
Hello Bella-donna and Dan,
This has turned out to be a most valuable discussion. Bella-donna, I'd never heard of SWEDDS before. I can't tell you how grateful I am to you for alerting us to this, and I've started learning all I can about it. It seems to make a great deal of sense in my case. I've often wondered whether I rather have a condition that mimics some PD symptoms, because I'm fit and strong and in better shape than a lot of non-PD people. It wouldn't surprise me to learn that I've been misdiagnosed despite my response to levadopa. Please let us know the outcome of your consultation with the specialist.

Dan, I can't locate a MDS specialist in my corner of the world, so I'm thrown pretty much on my own resources. Neurology is a very complex field, and despite the fact that I have very little grasp of the subject, it seems that I've acquired more knowledge of PD than the local neuros! I was very tempted to tell the last one I saw that he didn't know what he was talking about.

Dare we even begin to think of recovery?

All the best
Posted 6/6/2012 2:42 AM (GMT 0)
I forgot about the very first symptom of PD. It is the loss of sense of smell. It can happen decades before onset of PD. I lost my sense of smell about 35 years before PD. I was not told at the time. It was blamed on a virus that I had had. White bread smelled like ammonia. All the bad smells went away and I had no sense of smell.

How are yours?

Never heard of SWEDD-UK. Have to look.

Dan
Posted 6/6/2012 5:50 AM (GMT 0)
Hi Dan,

My sense of smell is quite normal. But can you have PD and retain your sense of smell, or does having PD necessarily mean loss of this faculty to a greater or lesser extent?

Cheers

Llew

Posted 6/6/2012 6:03 AM (GMT 0)
Hello Llew and Dan,

Sense of smell? I started to lose mine about 6 or so years ago which I really noticed when my husband complained I was burning everything on the stove. Doctors and specialists I have asked about its relationship to PD said that it was too far back to be relevant. A PD friend of mine said he lost his sense of smell many years before his diagnosis. His doctor told him the same thing - just too far back in time to be relevant. Interesting. I still have some smell but not a lot. Can be a useful deficit sometimes, but dangerous if you are relying on it to smell smoke in your house.


What I have learned about PD medications is that often they are used for a variety of other conditions. Artane was given to me initially for PD and certainly it lessened the tremor to some degree. It can be used to treat Parkinsons-like symptoms, and also for treating unwanted effects of anti-psychotic medications. Sinemet and similar brands can be used for PD-like symptoms too, such as Restless Legs Syndrome. My husband was talking to a lady recently and she told him she was on PD medication for some other condition. Unfortunately my husband can't recall now what the condition was, but at the time, he was very surprised. Maybe he will remember one day - hope so.

LLew, glad you are getting some info from the SWEDDs article. I was reading a research article recently and this scientist said that there were currently only 2 ways of confirming PD - 1. clinical diagnosis based on symptoms and 2. autopsy. Why does the last make me smile cynically?

We are all on an uncertain and unknown journey, but that's life anyway. I am trying to keep an open mind, making extra efforts with my diet and overall mental, emotional and physical health - I really believe that's the key. For everyone, it's a different path and experience which leads to the same destination. Just don't give up.
Posted 6/7/2012 3:11 PM (GMT 0)
Llew

I do not know if SoS is automatically part of PD or not. I do know that it can help to diagnose between PD and PD-like symptoms. Thr first question that both of my neuro's asked was "How is your sense of smell".

The neuro's are totally wrong about the timing between loss of smell and PD onset. 

Bells

Yes, no snese of smell can be a plus. I also have an ileostomy, if you know whhat that is. Talk about stink when I empty........

Dan

Posted 6/7/2012 11:35 PM (GMT 0)
Hello Dan and Llew,

Thanks Dan for my first huge laugh today.

There's a very interesting article on ET, PD and SoS (don't we love acronyms or is it just plain laziness?) on the Harvard Medical School Family Health Guide - worth a read

I found this on the Parkinsons Recovery website by a PD lady called Lynn. I am quoting her and trust she does not mind my passing this onto to you :


"After living with this condition for over 11 years, I have learned:

a) Not to blame every health misstep on Parkinson’s. In fact, now I look at every other reason first.

b) Not to think I am deteriorating or the PD is getting “worse”. It just is what it is. I don’t believe in giving it too much power.

c) Not to believe everything a Dr tells me.

d) To follow my own path, when something feels good or right to me regardless of the opinion of others.

e) That laughter, singing and dancing are beneficial in the treatment of this condition.

f) To respect everyone’s right to do what they think is best for them. They are usually right.

g) To be positive (for the most part), there already are cures in the form of homeopathy, a stroke, I once heard of someone who had a back operation and as a side benefit, was cured of PD.

h) That being aware and proactive in my treatment is a must.

i) To be gracious in receiving. (This is a hard one to learn)

j) I dislike being called a “Parky”. I am a person. If you label me, you negate me. (that’s from Konrad Lorenz).

k) I don’t have a disease (the visual of which is something that’s eating away at me). I have a condition, as the Chinese Medicine Doctors put it."

May we should rename PD to PC.

I love the idea of dancing and singing - I belly danced for 12 years and taught for 4 years. The urge is now on to get back into it again! As a shaky lady, my shimmies are superb! We live on several acres so singing out loud is possible and a non-disturbance to neighbours, especially with my voice - uugh!

Llew, I recollect your saying that going into shops and supermarkets is not a good experience for you. I had this problem initially, and occasionally still have to steel myself beforehand. What I have found to be useful is to take some deep breaths, set your sights on where you are going, and importantly try to walk in longer than your normal strides ie step out confidently. Practice this at home first. Hopefully it helps.

Bells
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