Now Im confused- Movements specialist saying I dont have PD.. anybody gotten comnflicting diagnosis?

Hi mi neurologist sent me to a movement specialist for an evalutaion.

She wasnyt interest in my symptoms but said despit my trmour (which I always had as did my late Mom and sister) Anyway she sez I dont show the rigidity or gait as somone with PD and siad stop taking siminet and my symptoms were thyriod or meds (she was very intested) Now Im totaly confused, I like my neurologist and she thought thought thoug high hav a typical parkinsons she's pretty sure its parlkinsons, but the fancy clinic said the opisite. I am so confused!!

15 Replies

  • How do you feel when not on the sinemet?

  • I went to four neurologists and two movement specialist, before I believed I had PD, or felt I had an accurate diagnosis. I am a text book case (so callled) for PD, but found through my own research that having thyroid issues could cause tremors. I found that interesting being that I have been borderline Hypothyroid forever. It runs rampant in the women on my mothers side of the family. I have an appointment to see an endocronologist (if I spelled it right) next month about my issues. So my thought for you is--wouldn't that be great if you don't have PD but your thyroid is just a little off? Get a few more opinions first from other neurologist and a good thyriod specialist before you come to a conclusion. That Doc you saw maybe right. Good Luck! I wish you well.

  • You should seek another opinion. There are other diseases that also cause tremors. I didn't know that be hypothyroid could cause tremors. However, it may be a good idea to also see an endocronologist. Keep us posted.

  • Have Graves disease (hyperthriodsim) but was born with tremour. Developed hypertyriodism in 2001 from intefreon for hep c so know excatly when I git it. She (the specialisy said I didnt have the rigidity or weekness) Byt the tremour My sister MOm (who had PD ) and I all born with it, Only stop taking Siminet yesterday, I did very well on it in begining -temour stopped and had mor energy, but then couldnt get dose right (lowered it cause of nasea, Will keep you posted, Its the cognative stuff that scatres me, and the pain. The choking stopped on siminet to, I fthat starts again Im lost, Will keep you posted,

  • Dubdiva, there is a condition called dopa-responsive dystonia with parkinsonism that could be what you have, it may fit with your early history. Ask your neuro about it, as well as essential tremor which may also sometime look like PD. Best wishes with finding out what is wrong, chronic conditions aren't all clear even to the doctors, and can take a long time to diagnose accurately. You need a proper diagnosis so you get the best treatment.

  • thank you as to be honest I found this movement sprecilaist kinda glib-my graves is somewhat under control with meds as I refused removal, but all the cognative stuff and pain which has gitten more and more bzzare -doesnt makes sense.(especially as endo keeps sayaing the same) and indeed you are right was diagnosed with essential tremour years ago, which my neurolgist explianed can develope into Parksinsons. nmany thanks,

  • There is a symptom known as essential tremor. It is not associated with Parkinsons and does not usually respond to the typical drug modalities. I hope someone is able to differentiate the diagnosis for you. Good luck- no sense taking meds that don't help at all.

  • I went to my GP (local doctor) and asked him to check a tremor in my left hand. It appeared whenever I lifted a piece of toast off the worktop. He diagnosed benign essential tremor and I was content with that. He said it wouldn't get any worse or better, just inconvenient. A year later I was getting a judder in my shoulder when I pulled on my seat belt and when I turned over in bed. I tried another GP and she immediately made me an appointmrnt with a neurlogist at King's (London hospital) where I was daignosed with PD. The GP had asked me about my handwriting which I said had deteriorated. Strangely enough the PD affected my left side while I wrote with my right. The neuro remarked on this. I wonder if anybody else gets symptoms from the wrong side.

  • I too have been gettin the same bull..I dont know were to my ..dr told me yes it is Parkinson.....than he said it wasnt went for a second opinion...same test..mri...shock test,,, pushme pull me yank me around me tellss me nope not parkinsons it is pd cousin....parkinsonism....the wife and i call it Leroy...that is only part of it i have been to several colleges...TO TRY AND GET into a parkinsons study no one will take me because i dont have parkinsons i have pakinsonism....driving me nuts..iam in pain 24 hrs a day,,,joint pain and pain in my n=knees and shoulders from falling all the righht foot cramps up and my toes curel under hurts so bad....i can not write...cant speck...cant scoot ....when i fall icant get up...but if i miss a day of my lexapro i get in a cryin mood an antivan and a lexapro usally squre me away...i do take dopomine 4 tabs 3 x aday..................changing drs have an appointment next month....shit iam 62 yrs old had this since i was 58....enough already HELP....if it wasnt for my illegal use of mariwana i would just quit..but my wife of 40 yrs...keeps me agoin

  • I feel you- If there was a blood teste or something-My original neurologist is sweet and she hinks the 2nd one is wrong as theres so many atypical cases. Right now she has me on the lowest dose of siminet (it helped for a while (my lifteime tremour dispared which is why she thought, well one of the reasons. But Its a rollercoster-In mean time am trying to treat my thyriod for which theyve hasd me on liver toxic meds for 10 yeasr now (Im HEP C+) with homiopathic and supliments to get my immunse system stronger- but the PD thing -well dont have to tell anybidy here,,At first I was relieved when I had a sure diagnosis as it explained so many things, -JUst tryingto make the most of good days and accept that some days are awful...Your in my prayersx

  • I went to the Mayo Clinic, in Jacksonville, FL, and was told I did not have PD.

    Two weeks later they decided I did.

    What a roller coaster ride.

  • I also went to Mayo Clinic in Jacksonville and it was not a great experience, I would not go back there.I spent 4 days and what a waste of time . . Did you see Dr.Uiti,?

  • My heart goes out to you who have suffered through this process. Getting accurate diagnoses can be difficult with PD. Do remember that there is (FINALY) one test that should be able to resolve the question as to whether what you have is for certain PD - It is called a DAT test. I would recommend following Rodias advice above plus having the DAT scan if deemed appropriate for you.

    Steve (Bisbee, AZ)

  • I have many diff dx and have had manydiff dr's with diff opinions. One actually told me I just need to drink more water, lol. I, too, have Grave's but had radioactive iodine years ago to remove thyroid..believe that was the beginning of everything for me. I've heard that if you have had one auto ammune disease, you are prone to others. Thought forever I had MS, still think I do. When we are on this roller coaster of diff dx and drs opinions we have to be our own health advocates..well, hang in is frustrating, depressing and all the rest, but all we can do is ask questions on this site and hopefully get some answers. tks for your question. Hyperthyroid causes bad tremors and excessive sweating and severe weight loss. I have felt like this for a long time..but like someone else on here said I feel like I just woke up and lost myself. I want me back..blessings to you and iI hope you find the relief and answers you are searching for. I'm learning that we will probably always be searching for answers because it is all so complicated..too many symptoms!! (I am no longer hyper, but hypothyroid)

  • Hiya - had the tremours long before graves (was being monitored for my thyriod as I was on intefreon for hepc ) The interferon didnt clear the virus ut did mess up m ummune system. I also hear that about immune disease and wondered to about MS. Ive never had the scane w/ contrast (both PD and MS is rampant in my family) Been fighting with endo for 10 years not to radioactive iodine ir surgery. and wre argue monthly about dosage of tapazole -so on jy first week of holistic approach- but though soe of this stuff is graves, it doesnt explain the cognative stuff, the falling , tired throat muscles, ect. But Ima keepimg positive,- your are so right theres so many questions and it gets all intertwined and depends on doctors (many whom don wanna deal with questions.... blessings and thanks

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