Well, I finally have to turn to you all for advice. I am 45 and was diagnosed with parkinson's 4 years ago. After 4 years and 4 neurologists confirming the diagnosis, and me finally accepting it, I am stunned. My neuro up and left t h e practice, moving across the country, without me knowing until I went in and saw a NP. After all her usual testing and confirming parkinson's once again, she assigned me a new neuro. She sent me for 2 MRIs and an EMG. After my EMG my new neuro confirmed carpal tunnel. I have pain in my left hand along with complete numbness most of the time. I asked what do I do...I wear a brace but still have issues. He said, don't worry about your hand, I am concerned about your tremor...did a to u c h my finger touch your nose test and said, that's not Parkinson's. Cut stalevo down to twice a day and start taking respiridal. It is an anti psychotic...no you are not crazy. If tremor gets worse or side effects too much STOP taking it. I'll see you in two weeks. I said wait I have questions and he said two weeks (not to mention I waited an hour past appt time)...and walked out, leaving me stunned!

Sorry I rambled but I am still in shock. Any thoughts?? Besides the obvious, get a new doctor...thanks for any replies

24 Replies

  • Dear Barb;

    I don't know what to say.

    I know it has taken me 4-5 years to get out of denial about having pd. In fact, when I was diagnosed, I went into a tail spin.

    Now that I have accepted it more, I am more able to learn to cope with the symptoms.

    And that is a good thing.

    I am curious as to what others on the blog have to say to you..

    Yeah, get another doctor!! Maybe shop for one before you settle. We need doctors that are compassionate and have time for us.

    Hugs and love from Eva G


  • Barb, We learn to ask our important questions at the start of the interview since most doctors have only a short time, usually 15-20 minutes before his/her next appointment and that patient is already waiting. I made the mistake of asking about my shaking and other PD symptoms near the end of my allotted time with my GP. She looked at her watch and said, "It's probably "Essential Tremens" that is causing your shaking. It comes from too many birthdays. See you in two months". At the next appointment she listened to my, question, did the "pull my finger" test and sent me to a Neuro to confirm her diagnosis of PD. Wishing you well, don't let it get to you. Have a nice day.

  • Poor you. Aside from the obvious, find a new Consultant, you must remain strong. A lot of people have Parkinsons and live their lives to the full, as best they can. I am lucky in having a fabulous Consultant, but the first one I had was horrible and I never went back to him!! You need to know what you have got so that you can come to terms with the diagnosis and learn how to cope with it. And you will cope. It may not happen overnight, but you will cope. We have no choice, but to cope and get on with our lives as best we can. You must find a Doctor who you can relate to and who is sympathetic. Good luck.


  • my Primary always goes over my time when I have an appointment and answers all my questions. Especially if it may be an indication of something more serious. Guess I am just lucky to have found him. Don't know where you are but look for a Movement Disorder Specialist. If you do not belong to a Support Group find one and talk to them. Find out who they see and if they are happy with their treatment plan.

  • Barb1968

    Many of PWP face your dilemma. After diagnosis, I too argued with my neurologist about my diagnosis and his proposed medical plan. Later I realized that I was not getting the information about Parkinson's disease to understand what was going on.

    Information that would allow me to participate in my own health decisions.

    I have found a few foundations that have been a source of direction, support and encouragement. I would suggest that you Google "Davis Phinney Foundation". Look at their website, engage with them and their community. You will find all three: direction, support and encouragement.


  • Hi Barb. Nobody can give you advice unless you know exactly what you have. Is it Pd or is it not Pd. If it is Pd, then I would suggest that you visit my website and read about EXERCISE; GDNF; WALKING; DANCING; BOXING; MEDICATION and many more articles on matters affecting Pd patients.

    If it is Pd it is NOT THE END OF THE WORLD! There IS something you can do about it!

    Good luck


  • Hi John.

    What s your website

  • Hi Ethelene. My website is - reverseparkinsons.net.

    Talk to me!


  • Thanks to you who response already but, Well, I think I should have just asked the question......has anyone been told they have PD by numerous doctors (I got diagnosed 4 years ago and went for 3 more opinions), and now a new doctor says no? People say get more than 1-2 opinions, who do I believe? For 4 years I wanted someone to tell me it wasn't PD and after all I've been through and finally accepted it someone new says no! Until my next visit I have to worry about what neurological problem I do have or is this doctor wrong....sorry...I am just upset and can't believe this is happening 😞

  • One of the problems with PD IS THAT IT IS ONLY A NAME. It is defined by a constellation of symptoms and if you have enough of them, you will be diagnosed as having PD. that constellation can appear from different causes...genes, drugs, pesticides, chemical exposure, or that great catch all- idiopathic (unknown). It will be accompanied by a significant emotional component, not as a result of your concern about having the disease(which can happen along with) but as a part of the disease itself. Some will have Lewy bodies, some won't. Whatever the cause(s), the neurological result will be called PD. a neurologist should be able to run you through a neuro exam and tell you if you have 'PD'.

    If your new doc takes you off Sinemet and you are cured by B12 injections or whatever, you still had PD... just not from what the other docs thought it was from. Their thought had to be that your brain stopped producing dopa so you needed dopa. Maybe. But now there is considerable thought that the dopa is there but just unable to be released from the cell. There are quite a few ideas as to the action that keeps dopa from being available for use by the body. Just get a good neurologist, preferably one who is a psychiatrist as well. They sometimes come together and can be helpful. Just use your best judgement and remember that whatever is in vogue is 'the CURRENT wisdom' - that from my oncologist friend who trained at Mayo and taught at Yale. THERE MAY WELL BE MORE TO FOLLOW WITH CHANGES IN WHAT IS CURRENT AND PD PATIENTS CANT ALWAYS WAIT FOR DOUBLE BLIND STUDIES

  • I was put on respiridal for a short period of time and it gave me a noticeable left side tremor which only ceased when I stopped taking the drug. It was a drug that also made me feel bleak. Best of luck. Cheers

  • my mother was left with permanent changes (side effects) like tardive dyskinesia after being put on respiridol for some time. She had Alzheimers and they said it was to help prevent her psychotic behaviour. I have no doubt it lead to her premature death which in her case wasn't a bad thing but I would NOT EVER take respiridol. Or allow any one in my family to take it either.

  • I think you finally found the right Doctor, your lucky. Do what he says. Two weeks big deal, just enough time for his advise to start to take effect so that he can monitor the change, what is the problem? The good news is you do not have PD the bad news is this doctor does not think the world revolves around you. You have a choice stay with this doctor that seems to know what he is doing or find one that is charming. No you do not have to worry, what are you worried about now, that he will change his mind .Carpel tunnel takes along long time to heal. A shaky hand does not qualify for a PD diagnosis. Incorrect diagnosis with PD is very common, apparently you are on the lucky side, why are you not happy.

  • I'm with GymBag: 2 weeks is not long at all and he might talk more the next time. Maybe there are too many other possibilities for him to say more about what it might be other than parkinson's. For some reason, I did not get a bad impression of this doctor from your comments. Sure, it would be more reasonable if he would actually take more time and talk to you and charge 1/4 as much as they do in Canada, U.K., or Australia, but the AMA still controls the U.S. government, so we can't expect any better until people get angry enough to stop voting democratic and republican.

  • 1. Get new DR.

    2. Send previous neuro bill for your time.

  • HI Barb, I read your comment, and I can understand what you are saying. I was diagnosed in March 2007, 8 years ago. Their are so many ups & downs , it's terrible.

    I have been on about every medicine their is. I will tell you that the good Lord has really help me handle it. I am getting to wheir I can hardly walk, which is very hard to face. He is what I depend on. I'm on 2 sinamet 3x a day,plus 2 amanadine 1 2x a day,

    a neupro patch 8 mgs 1 eve y 24 hrs.A good attitude is what you hve to keep. Hang in their.

  • Are you planning to try the new drug, Rytary? Also, do you have any eye bleariness from the amantadine? It sure gives you energy.

  • A DarScan will differentiate between essential tremor, carpal tunnel syndrome and Parkinson's surely. See what he has planned for you and get your questions ready.

  • Please do pursue getting treatment for the Carpel Tunnel. Mine started mildly just over 12 months ago. It was told by my GP it was a bit of arthritis and dismissed. I diagnosed Carpel Tunnel myself by online research, my dead fingers and at times terrible pain. I now have a pretty useless hand as well as PD.

    You can have an operation, apparently it's a nerve in the wrist. I also have deformed fingers on that hand from clenching my fist to stop my PD tremors along with my Carpel Tunnel

    Do have a thyroid blood test too just to check if you have an over or under active thyroid, apparently the two can go together. I was hyperactive.

    My conscience wouldn't let me not contact you. I hope you get sorted soon.

    Take care, Cicely

  • See Annie11 Lewy body. I actually intended to write it to you. Btw, we have never been to a support group and never will but when I talk to people who have....they never know about the things I wrote about. It does not pay to think only inside the box when it comes to PD.

    We are extremely aggressive with this disease.

    Btw have just started the new drug Rytary. Good extended coverage, good breakthrough coverage. For us, this has controlled a huge amount of nausea and immobility.

  • I started Rytary 3 weeks ago and it gave me festination of gait (small steps then falling forward). Very dangerous-even broke a finger. But I am not sure if this is just progression or scary drugs mixing together in my body. Please let me know what you think..THX

  • Jury is out. It lasts well but it seems harder for don to get up and adjust himself in bed. He says he feels weaker but sometimes it doesn't appear so. It is all complicated by his compulsions which will cause a breakthrough with nausea, trembling, rapid HB etc. Rytary doesn't help that.

  • I am puzzled at the repeated tests to confirm you have PD. Seems to be a waste of time, especially as your appointment time is so limited. My consultant makes copious notes, listens to my concerns, tests to see how the condition is progressing (or not). There is no pressure on time - maybe the difference between our NHS and your private system? Anyway, you must be in turmoil with you latest diagnosis, I guess you don't know whether it is good news or a bad consultant and you have my sympathy.

    Reading through these replies to your concerns raises another important point, which is applicable to many of these posts.

    Please remember that PD is very personal. It affects people in different ways and everyone will have their own means of dealing with it. So don't assume that the responses you get are applicable to you - they are a record of their own experience. That is all anyone can give you. Take what is relevant to your situation and see if it suits you but discard it if it doesn't.

    And the above are my views only and subject to the same caveat!

  • Thank you Jupeter...I was looking for advice...good or bad I guess..I know what you are saying...I will take what applies to me. 😃

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