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Parkinson's Movement
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Trouble Getting a Diagnosis for Parkinson's Disease

Trouble Getting a Diagnosis for Parkinson's Disease

I'm having a hard time getting diagnosed and am a single 66 yr. old female even

though I have a noticeable head tremor only when at rest. What seems like

hypomimia, (face doesn't respond to what I want to express, slow thinking, slurring

of speech has been noticeable to other people. A swallowing assessment showed a

swallowing disorder (decreased tongue base movement) deemed as neurological

origin, as well as very slow and troublesome digestion, constipation, etc.

I am finding no one is listening. I am not particularly rigid but very stiff back of neck

and upper trunk that has gone on for several years, 24/7, (back sometimes).

I'm getting slower and stiffer. Mental aspects are ignored.

I don't feel pleasure or rewards, (anhedonia-I looked this up a few years ago and it matched what I feel), often feel loss of motivation to do anything.

Go somewhere for 2 hours and come home and sleep for 2 hours regularly. Fatigue!!

Avoid social situations and all of these are not my personality at all. I used to love to entertain and loved the woods and outdoors.

Doctor doesn't seem to have an explanation or a referral to someone that does.

These things started about 3 years ago as did diminished smell.

am stumped as to what to do now.

Of course they are looking for rigidity and even though my left leg goes numb and turns in at the ankle occasionally it is not rigid nor is anywhere else although I would say it's inside and my neck is always stiff. Doesn't count according to neurologist.

Had a forefinger tremor one time.

Eyes are bothered much of the day and not much of a prescription change but borderline macular (retina?) degeneration.

Very hard to use my neck muscles to sing, cry or talk very long as they're weak and it results in pain.

Any suggestions welcome. It seems I have at least 2 of the criteria but no diagnosis and I don't know why. I would like to try levodopa to see if anything settles down. I live in BC Canada

Thanks and I will check back for any replies.

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Rideabike all those symptoms dont suggest Parkinsons to me. For example head tremor isnt common in Parkinsons, it usually suggests Essential tremor. People are writing about ET having quite an overlap with PD but its not the same.

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Thanks for the reply. Yes I hear that all the time. But the type of head tremor called essential tremor is usually an action tremor. Mine starts when I wake up and go to bed or sitting in a public place while resting, sometimes when I'm standing in line at the supermarket. I often have a strong internal tremor in the chest that goes with it. Some Parkinson's sites include head tremor and others exclude it or say it's rare. Seems to be a disagreement of the criteria for Parkinson's. I know someone who has it pretty much all the time while walking, sitting, talking. He was diagnosed with Parkinson's. I sometimes have it while doing those things as well. It's baffling but ET doesn't happen while in bed lying down. Not that I've read anyway.

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There isnt disagreement about diagnosis criteria, it is discussed internationally and there are agreed criteria. None of the symptoms as you describe above currently fit those criteria. What you describe doesnt sound like my experience of pd, yes I know we are all defferent bt there are also common elements we share.

Alexask has some interesting suggestions, i’d probably fine tune it (to make sure i’m not just making very expensive urine) . Rather than pursing a diagnosis I wonder if you can alleviate your symptoms through selfcare.

If you have pd it will eventually become obvious, but unless you are in a hurry to be on meds there is no advatage to early diagnosis.

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I'm looking forward to the international info. but I have done a lot of research for about 3 years. I have researched many scientific papers, Parkinson's organizations, government agencies online, Hindawi studies, US National Library of Medicine, etc. etc. All of the symptoms I wrote are on various sites. We must be looking at different sites for sure but there are so many. Are you primarily in the UK? I've looked at lots of the sites there as well.

I didn't list all my symptoms, just the ones most disturbing. Hypomimia and swallowing disorders seems to be akinesia or bradykinesia. If you felt what I feel everyday in my head, face and throat you'd understand my need to know more. Anhedonia or loss of pleasure is described right down to the loss of dopamine/serotonin in the gut/brain. I have learned so much about the human brain and gut it's pretty amazing what a loss of neurons will do to a person.

I feel it is a neurological condition like Alexask said and cannot pinpoint what kind but feel that before I see anymore disturbing symptoms it would be wise to try some of the supplements, maybe not all as it is expensive. Doing something, anything is better than nothing. I'm not a fanatic just curious about why my whole life has changed in the course of 3 years, the head tremor being about 5 years and the rest progressively in the last 3. I am interested to hear if anyone feels similar to your views that these symptoms don't sound like Parkinson's. If PWP have these symptoms don't hesitate to let me know. Please!!

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For 10 years I have been diagnosed with pd and have read daily and widely, mostly scientific papers. I know all the symptoms you mention but you describe them quite differently to how I and those I know experience them thats all. But if you think you have pd and no one is listening then could you get a DaT scan (its expensie, not proven more accurate than a neuro specialist diagnosis and not available in every country, we do not have it) but it is a useful tool. If you think your symptoms are neurological then can you self refer to a neurologist?

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I will check it out for sure. I really am not feeling well for years. WWW has been helpful to keep balanced and I try not to let this upset my life and stay positive. A good laugh helps and take one day at a time. Someday I will get the answer and move forward. Appreciate your concern.

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I disagree with Hikoi. Before starting levodopa medication I had tight stiff muscles on the affected side of my neck as well as leg on the affected side.

The trouble with facial expression that you describe is a common symptom of Parkinson's. The anhedonia is a complaint I have seen more than once on this forum.

Your symptoms are not the most typical, but as we commonly say here, every person with Parkinson's is different.

One big area in which I agree with Hikoi is do not need to wait for the medical diagnosis. You can try mucuna, which is an herbal version of levodopa. Use the search function on this forum to see how to take it. If it helps that confirms the Parkinson's diagnosis.

One more thing - these are non-trivial symptoms. If all the doctor can do is shrug at them, if you are going to see a doctor it needs to be a different one. A neurologist specializing in movement disorders would be the person to see.

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Thank you! It means a lot to have someone verify the symptoms. I know they're real but at times I think it might be something else although I'm becoming expert at doing searches and researches. I have done medical transcription in the past and the words and jargon aren't completely alien to me. I hope to see a neurologist who specializes in Movement Disorders. Will keep this post posted!

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Commiserations. But you have come to the right place. Firstly I recommend you go through as many of the recent posts here as possible. There are a load of supplements you can take that may help you in the absence of a diagnosis. Search the rest of the website for further details of the stuff below.

Not sure where you are , but if in the states I can guarantee that these supplements would be way cheaper and most likely more effective (without the danger of some quite horrific side effects) than anything you would be prescribed.

Even if you don't have PD you definitely have neurological issues which most likely will benefit from some of the below:

1. Mannitol

- helps me. Restored my sense of smell. It is an osmotic diuretic, so it will resolve constipation too. Some report no benefit apart from excess wind.

2. Curcumin (with pepper) and a fatty meal to help absorption

. Or eat a lot of curries.

3. Large doses (up to 4grams per day) Vitamin B1. Others here absolutely rave about it

4. Coconut oil

- I take it in coffee.

5. PQQ

6. Trehalose

- just started it

7. Mucuna Pruriens - contains levedopa, some form of which which you would be prescribed if diagnosed

8. Cod liver oil - good source of vitamin D

9. Magnesium - I take Magnesium Citrate.

10. Comedy. Watch 15 minutes before bed

11. Friends. You must get out and see them. Parkinson's is a disease of isolation. That's why it affects men more than social women (imo).

12. Calcium. Avoid. Tis no good for Parkinson's. Skimmed milk especially bad as it lower's uric acid levels

13. Make faces - Grimace - move your eyes. I found a blog on this but have lost it. I make Oooh and Eeeee noises. I think it helps

14. Sing. In the car, in the garden. Where no-one can hear you (and if you have parkies your voice isn't what it was). Or maybe in a loud rock concert.

15. Melatonin. I take 1mg, but I don't know whether this helps or hinders.

16. Hypnosis

17. Meditation

18. Acupuncture - perhaps

19. FitBit - I am in a group which does weekly challenges where they average about 14,000 steps per day. If you do 14,000 steps a day Parkinson's progression will be much reduced.

20. Get outside. You need that Vitamin D.

21. A cold shower try and get it on your face - exercises the vagus nerve

Exercise

22. Box - Have put up a punch-bag in my garage but if you can get to a rock steady boxing class that would be beneficial

23. Row

24. Rapid Cycle (stationary or pedal). My £45 second hand lurid pink exercise bike has really helped.

25. Run (if you still can) or Walk as fast as you can.

26. Dance

27. Table Tennis

Diet

Some benefit from a Ketogenic diet

- eat the following:

28. Brassicas (brocolli, cabbage)- good in vitamin D ) . Cauliflower also contains Mannitol. Onions and Garlic. Again naturally high in vitamins. Also are good for removing metals from the blood.

29. Cold Shower -Cold water on the face - exercises the Vagus nerve

30. Garlic - naturally high in Vitamin B

31. Rosemary.

32. Green Tea.

Or take a green tea supplement.

33. Blueberries

34. Salt. I think salt is ok in moderation. Salt in the urine drags calcium with it. But don't over do it your will be prone to Osteoporosis

Coffee - reduces vitamin B levels. So not sure whether it is good or bad. People who drink coffee are less likely to get Parkinsons, but correlation is not causation!

Avoid

Fast Carbs and sugar and dairy (too much calcium)

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What an interesting reply. I am keen on supplements just not swallowing them but I try. I'll take these into consideration, esp. mannitol and mucuna pruriens which I've heard about in the past. Have been looking for it. Just moved to Merritt, British Columbia in Canada, a smaller town. Thanks!

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Mucuna pruriens, even though supplement, exerts pharmacological effects and may help replenish dopamine when the dopamine levels are low; however, it should be used cautiously like any other dopamine-induced drug. Before you take mucuna or anything that affects the dopamine levels, make sure you suffer from a dopaminergic disease, such as Parkinson's.

You should have a DatSCAN, which may show whether you have a dopaminergic disease, such as PD and PD syndromes. DaTSCAN can be used to differentiate between Parkinson's Disease and other similar such as essential tremor ncbi.nlm.nih.gov/pubmed/223... First step: refer to an experienced neurologist.

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Sounds like good advice to me.. Hope it's covered by out health care here. Will certainly check. Thanks!

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Hello ridebike. Datscan would be great to confirm if PD or not. However, I was told by a movement disorder neurologist that it is not available since it was not approved by Governmental Agency. It's too bad because it would have benefited me also.

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Health Canada has made lots of cuts and "free" system is failing many people. Thanks for letting me know.

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UPDATE: I just checked online and DaTscan is now available in Canada as of Jan. 11, 2018! It could only be ordered by a neurologist so first have to get the appointment.

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Hi. Can you copy me the link to what you found online about DATSCAN approval Jan 2018? Tks

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DAT scan is very expensive and not 100% conclusive. In Michigan costs 8k and BCBS covers 80%; In BC not sure if it is covered but in Ontario is not as far as I know.

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Alexask

Wonderful!

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Get yourself to a movement disorder specialist.

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arwenmark, you took the words right out of my mouth. I agree- make an appointment with a movement disorder specialist for an exam. They are specially trained in the nuances of Parkinson's Disease. Please let us know what he/she says.

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If I ever get there I will....

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Just to let you know I am now referred to a movement disorder specialist. Don't know how long it will be (could be quite some time as there is a shortage of them here) but at least there is hope.

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Are your symptoms on one side or both? My understanding is that PD starts on one side.

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I had a tremor in left forefinger one time only while waiting in the back seat of a car. My left leg often gets a cramp while I'm in bed that starts from the thigh to the foot and then subsides. I now get numbness in that leg while walking or sitting and it isn't a cramp, just numb but affects the whole leg and feels like the ankle is turning in. It goes away. The left side of my tongue feels like it doesn't want to move. (it's not from a stroke). I'd say the left side is more affected and is my dominant side. (left handed). Sometimes I feel unco-ordinated while walking like my head doesn't know what my feet are doing. Strange feeling.

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I often say to myself that Parkinson's is like a slow moving stroke.

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Its called “Movement Disorder “ then we have to counterattack with Movement . IMHO; When you feel down or in pain go up and down from stairs at your house to raise your heart rate. The higher heart rate the better feeling I have.

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Agree with what arwenmark said

Your MD family doctor should give you a referral to a Movement Disorder Specialist which is a neurologist with extra training.

What you need is medication that results in a lessening of your symptoms , then rest and then some exercise and lastly a name for your decease.

The only way to know for sure if it is Parkinson's is that the PD medications help decrease the symptoms.

Personally I believe Hikoi is correct that it is not PD but whatever it is I think you need help now to treat this yet unnamed disease and worry about the spelling later and there are several things it could be. PD is very often miss-diagnosed but usually the other way.

I can understand your wanting to put a name to it and It may be you have decided that it is PD but the doctors may be waiting for key things to show that will confirm their suspicions.

Try and stay away from stressful situations, many neurological deceases get worse under stress and also create stress.

Good luck

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My family Dr. didn't see anything to merit going to a movement disorder specialist. He referred me to one as "patient referred" thereby absolving his own professional opinion to support it. He never even pain any attention or passed on the swallowing assessment to the neuro (movement disorder specialist). There are something like 6 of them for all of British Columbia, Canada. The referral sits at the bottom of the pile and has been there for almost 3 years. I have a new GP now as I just moved so maybe he will send that assessment on. Am I wrong to put so much in store of a swallowing assessment? Something neurological is causing the digestive problems for sure. How do people get diagnosed when they have no tremor or rigidity?

Yes stress bothers me intensely!! Maybe a trial of the drug would diagnose it or not. It sure would be good either way.

Thanks for the input...

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You have come to the right place to share your concerns with. I have gone through, almost exactly, your same symptoms. My neck tremor and hand tremors would be embarrassing. My digestive system slowing down, and constipation and swallowing problems were all not addressed by my family doctor, in the small town where we lived. My wife and daughter were concerned. This event on for several years. There were no specialists in town. Then I had freezing episodes and a bad fall with a concussion and blunt force trauma. Then, I started having resting tremor in one hand, and stiffness and rigidity, that went on a couple more years. I had no clue, as to what was going on. I showed the doctor my concerns; however, I didn't know anything about Parkinson's. Finally, my daughter had enough and moved us to where she lives, in a larger city, with a regional medical center. She sent me to a well respected Internist, who saw that I had a problem, right away. He referred me to a movement disorders specialist, who, after researching my history and taking tests, put me on a trial of Sinemet, and diagnosed me with PD. My suggestion for you, is to request a referral to a movement disorders specialist. PD is not easy to diagnose. There are several neuro-degenerative diseases, of which PD and it's variants are a part of. It's very important that you see a neurological specialist, so that you can get the right diagnosis. Perhaps you could get some relief from your symptoms, as I did. I no longer have the tremors and stiffness as much. Good luck!!

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Thanks once again and even though our symptoms are different I feel some may worsen just as the stiffness is doing. These post are stirring me up to get some ACTION!!

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Not sure if anybody has mentioned testing for Lyme disease, but that's the first thing I would recommend since you "loved the woods and outdoors" and many symptoms of PD overlap with Lyme which is called "the great imitator". I was diagnosed with PD over a year ago but previously was diagnosed with Lyme and have been educating myself on both subjects. I am not a medical professional but from reading many books I would strongly suggest testing for Lyme and co-infections which commonly accompany tick bites. I was bit by a tick once as a child but had no classic bulls eye rash and no symptoms for decades. However, as we get older and our immune system weakens the dormant Borrelia Burgdoferi (Lyme) infection can raise its ugly head and create all kinds of neurological issues along with host of others. Hope you'll get Lyme literate doctor to evaluate your case. Best wishes for health and recovery!

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I have wondered about that since hearing about Lyme disease. I lived in Missouri USA for 8 years from 1975 until 1983 when I returned to Canada. Was bit by ticks many times but don't remember the rash. Could it lie dormant since that far back? That would be as much as 43 years ago. Anyhow thanks for the input. I guess I put off getting tested because it is very expensive here and will probably will have to pay myself. Nice that so many people have responded with suggestions. Hope your health improves as well!

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If you have to pay for the test, in my opinion the best lab to run it would be IgeneX. But try to do some research yourself since new tests appear on the market and my knowledge can be outdated.

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It took 8 years to get the correct diagnosis. PD is not the same for everyone. I am not a Dr. I think you need to listen to the best Dr you can find.

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Thanks for the reply. I sure hope it doesn't take that long. What were your first symptoms and how long to progress to the point someone took notice?

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Briefly I would recommend two routes toward determining whether or not you have Parkinsons.

1. Expensive - Get a DATscan where doctors can see that you have a diminshed amount of dopamine in your brain.

2. Inexpensive - get a prescription for Carbidopa/Levodopa or Sinemet. Take it for a couple of days and if your symptoms diminish or disappear, its an indication that you have Parkinsons.

There is no excuse for your medical care providers not to be actively seeking an answer to this critical question for you.

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So true. A GP cannot prescribe those drugs here, only a neurologist. RE: DATscan - I'm not far from the CA/USA border. Maybe in the states. Mexico would be good if I could get it there. Many things are much more affordable there and maybe a small vacation to boot.

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Are you certain that an MD can't prescribe Carbo/Levo? I'd be real surprised if they can't. My neurologist, when I first met her diagnosed my Parkinson's with some simple observations of hand movements and stuff. But she said that the "proof of the pudding" would be if I saw diminishment of symptoms after taking the drug. In two days I noted 50% reduction. Very simple. Being a cautious person, somewhat in disbelief that diagnosis could be so easy (BTW 25% of diagnoses of PD prove wrong )... and having good insurance I went for the DATscan which is very expensive, involves injection of radioactive stuff in your blood stream and the 20 minutes being scanned. For heavens sake, pressure your MD . . . you shouldn't be kept in the dark !

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I will try since I now have a new GP. It would solve the dilemma of is PD or not very quickly.

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I have an unwanted bottle of sinamet - I can send you some if you want , though of course taking prescription drugs sent by a total stranger without a GP could be an issue if something goes wrong! I am in Aus but visiting Vancouver late June - I think you are in BC?

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I'll see what happens next week with my new GP. He seems to listen but it's pretty hard to spring all this on him and he's not long out of med school. Have you been to Vancouver before? I'm about 3 hours away. It seems that it's the first one doctors try you on but will see if mucuna pruriens makes any difference. If I need it I should be able to tell. Will get back to you.

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How about doing some exercise?

My husband used to be a play hardware sportsman but even that he seems to have lost interest. Get your mind interested in doing things. If you looked in utube for pd exercises that could be a start!

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I just bought a bicycle and love it. Usually walk but knees are bad so hoping biking will make them stronger. It is very easy to lose interest and a real effort to get going but so worth it. If there was a dance class I could do that would interest me. Thanks....

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Find a neurologist who will prescribe a Datscan. There has to be some of the symptoms you experience that the neurologist does not feel is part of Parkinson’s Disease, Perhaps.

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The answer is simple. Get a doc to try you on carbo/Levo to see how your symptoms react. I say this from my experience that share some of your symptoms and many doc did not think it was pd. Thankfully the doctors i have now at a teaching hospital too did not think I had pd, but gave me prescription for carbo/Levo. I took a small dose at first but felt better right away. I could walk better stand up easier and no more feel like i could fall! Doc now say yes it is pd. Only you know how you feel. I'e been to so many doc. Even well meaning friends tried to diagnose me cause you do not look like you have pd! Pd patients are like snow flakes. I'e met a lot who have pd, been to many seminars. It is frustrating to feel I'll and frustrating to not get a diagnosises. Hopefully a doc will try you on carbolevo. Some in pd say the DAT scan is not as conclusive as some say. I wish you the best.

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Yes a snow flake is good analogy. I've hung onto that as many look at me and say same. They don't know how I feel inside. Thanks....

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Rideabike

I too have head tremors but this was actually what I believe was my first symptom which had started about 15 years ago. About 4 years ago I decided it was time to go see a Neurologist. He diagnosed me with Essential Tremors. Over a year ago I went back to see him because my leg was dragging and my toes were twitching and my muscles in my neck and shoulders were extremely stiff. He then wanted me to try taking Sinemet to see if it would help, which it really did, I was so amaze how it took a lot of my symptoms away. Anyways this is a standard method to diagnose for PD.

I think you should try to find someone that will listen to you because this isn’t all just in our head.

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The head tremor is shown on older pictures of PD on the net and mentioned in multiple PD sites but many still say ET. I woke up last nigh as I do often with the head tremor and then I'm fully awake for a few hours. A few years ago I shook inside for almost a whole night and that's when I knew this wasn't going away but was getting worse and trying to tell me something. A friend is coming to see my GP with me as she sits behind me at meetings several times a week and sees it as significant. I was told it could be dystonia as well but it doesn't seem to fit. There is a man at the same meeting and he and I could be called the "Bobbsy twins". He was diagnosed. I believe I am more stressed out in a crowd because I sometimes lose track of what's going on and can't keep up so shake more. Head and neck are extremely stiff. Thanks for the reply. I am going forward anyway.

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Whether you have Pd or some other movement disorder is purely academic. If they tell you that you have Pd they will put you onto pills that will do nothing to slow down the progression of whatever it is, because there is no medication that is capable of doing that.

Take my advice, for what it is worth, start doing some meaningful exercise. Read my profile and make contact with me. I don't guarantee that it will be able to help you but it can't harm you and it COSTS NOTHING!

Look at my website - reverseparkinsons.net and make up your own mind about what to do.

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Just for your information, Head tremor was the first thing I noticed about my husband it only happened on exertion He had also had several other symptoms but we did not make the connection, His main concern was his balance was completely off. He went to our GP at the time and she did a few simple tests, and found he had cog wheeling and told him right then that he had Parkinson's. So yes the head tremor can be part of Parkinson's, some people get jaw tremor as well.

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All these replies have given me hope that I may get an answer yet. Thanks for taking the time to answer my questions and get to know I'm not alone in these symptoms or the time it takes for a diagnosis. To JohnPepper and Jumex2017 and anyone I missed, I agree that exercise and other avenues of dealing with it are better than drugs at this point and I have to get off my butt and DO IT!! They don't say KEEP MOVING for nothing do they.

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I agree with previous posts; if a DATscan isn’t available, push your doctor to prescribed Sinemet to better diagnosis PD while exercising as much as possible. Are you able to retire soon? Time is precious and at 66 it may be time, so you can exercise in the morning or whenever your energy level is highest. As a single person it may be difficult to let go of the structure of going to work, work friends, and the security of building up your nest egg. OTOH, you live in a country with much more generous social services than here south of your border, and it’s possible to maintain friendships as a retiree and meet new people through hobbies, exercise classes, and interest groups. Take good care of yourself!

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I do most of my work in the am as by pm I feel very wiped out. Worked in medical offices and retired early due to a knee replacement that didn't go as well as it should have. Then got thyroid cancer so that shot me down even further. Felt much better while working and yes structure was helpful. I keep busy but it's not the same is it? Thanks for the good advice will keep it in mind.

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I was diagnosed after a brain scan which showed a reduction in my dopamine receptors

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So are you saying that the symptoms weren't conclusive when you went to the neurologist or did you see one. A GP cannot order a brain scan here. Must be a neuro so I have to wait. Thanks for the reply.

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I had been searching for a diagnosis which explained why I felt so bad -for at least two years. My symptoms weren't conclusive so GP referred me to a neurologist. He said that he would not diagnose PD based on my minimal symptoms. But he referred me for two brain scans - one said I did not have a brain tumour (!) and the other that my dopamine levels were down, and that was PD.

I am following John Pepper's exercise programme (see his posts) and certainly feel a lot better, but don't know if it's slowing the process.

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Hi Lockington2...I had seen a neurologist about 3 years ago and what he said was similar but from what he did see, said I would probably know in 2 years if it was PD. My head was shaking badly that day due to the stress of driving in a snow storm to the appointment. I could only wish we could get DaTscans done here as easy. He sent me for a CT scan and I too was relieved there wasn't a brain tumor. The Canada health plan will not order expensive scans easily so my hope is to see another neurologist who might now recognize all the "minimal" (not to me) symptoms as PD. Funny but our story is so similar and there are probably lots of others out there too. Canada is 6th on the list of numbers of PD per population in the world but didn't even make the list for diagnosis percentage. Later saw that Stats Canada showed diagnosis of PWP here is very low for our being 6th. viartis.net/parkinsons.dise...

The last few years I have seen such a dramatic change (slow and slower) and glad I locked onto HealthUnlocked. It really helps to hear I'm (sadly) not alone. Thanks for your reply!!

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