Movement specialist

[Annie81963]

Does anyone see a movement specialist for PD or just a neurologist ?

[M_rosew]

I think a specialist is best. My neuro specialises in PD, and her team includes PD nurses, physios and OT.

[laglag]

I see a movement disorder specialist. I feel they are better versed on PD.

[Annie81963 in reply to laglag]

Thanks . My neurologist is a sleep disorder specialist and I think I might see a movement disorder specialist .

[eh110575 in reply to Annie81963]

I am doing just the opposite of that, been seeing a mds since 2003, now a sleep specialist neuro with PA's!

[Hidden]

Well maybe you should keep the sleep specialist and have two . I wish I had a sleep specialist. There is more to PD than movement disorder (see non-motor PD symptoms)

[Annie81963 in reply to Hidden]

Good point. Thanks

[Hidden in reply to Hidden]

Sounds like a new thread coming on

I had polysomnography a few years ago. I have seen multiple neuro myself over the past ten years or so. Neuro muscular, Neurophysiologists, PD, Sleep disorder, Epilepsy etc.

[KEMPIN1969]

I'm seeing a movement disorder specialist in may

[Annie81963 in reply to KEMPIN1969]

Good luck. What prompted you to make an appointment ?

[KEMPIN1969 in reply to Annie81963]

Hi Annie,

I've been having various symptoms for a number of years

Jerky movements, balance problems face twitching confusion mumbling tremor in my hand etc

Since Christmas they have all got worse and my walking has got very bad and my arm doesn't swing when I walk. My gp said it all looks like parkinsons but sent me to see a movement disorder clinic in Dublin in may so hopefully I'll get some clarification of what is going on. I'm only 46 so it may not be just have to wait.

[KEMPIN1969 in reply to KEMPIN1969]

I'm also taking pramipexole two tablets a day to begin with

[Annie81963 in reply to KEMPIN1969]

My dosage was low also and I now take 1.5 mg 3x daily

[Annie81963 in reply to KEMPIN1969]

Hi Kempin,

I was 47 when I was diagnosed and had a lot of same symptoms you have. After many doctors and many years,I was finally diagnosed. I was a barber for 30 years and the drs. Always said it was carpel tunnel and after not working for a while the symptoms didn't stop , I saw the neurologist and he diagnosed me.

[KEMPIN1969 in reply to Annie81963]

I've been ill for a while with fibromyalgia chronic fatigue syndrome and hemiplegic migraines and I think they have been masking what's really been going on

[Annie81963 in reply to KEMPIN1969]

You have to stay on top of this, you know your body better than anyone. Good luck.

I too had fibromyalgia and chronic fatigue for years prior to PD .

[KEMPIN1969 in reply to Annie81963]

Thanks Annie, I wonder if there is a link

Research has found people with migraines are more likely to have pd

[Annie81963 in reply to KEMPIN1969]

I had migraines in my 20's, that's something we will have to investigate further .

[laglag in reply to Annie81963]

I had migraines in my teens & 20's also & I was diagnosed at 46. Maybe there's something to the migraines? I've always been curiousbut never researched it.

[Hidden in reply to Annie81963]

These must be related. There should be far more research into the underlying cause for PD especially around CFS/FM link. Thank you for sharing.

[Hil101]

I'm interested to know whether movement disorder specialists are well versed in things such as physiotherapy, exercise and other therapies that don't involve drugs or are they just medication specialists in reality? My partner sees a neurologist who doesn't seem to know very much about Parkinsons and says physio etc is a waste of time. Patently wrong and a big nocebo.

[lempa_nik in reply to Hil101]

I see 1-2 Movement Disorder Specialists, and consider myself fortunate. Their skills for diagnosing PD are the best. And for treating and mitigating PD? Well . . . uh, more limited.

My impression is, yes, that they are primarily versed in prescribing medicines. But some have a broader scope than others--witness, e.g., Jill Marjam-Lyons, MD, and her 2003 book with Mary J. Shomon, "What Your Doctor May Not Tell You About Parkinson's Disease," where the physician author devotes one-fifth of her book to complementary and alternative (CAM) therapies. Most MDS's may look askance at a lot of the CAM therapies because they are not well-validated scientifically. Of course, we all know such things as physical therapy or massage may yield tangible--but hard to measure--subjective benefits.

[Hil101 in reply to lempa_nik]

Thanks, that's interesting

[Annie81963 in reply to Hil101]

There is something new to learn every day. Thank you .

[sylviagreenhalgh]

I have cerebellar ataxia and cannot walk and see a movement specialist in March when they want to decide on whether I should have a brain op/shunt to drain off CSF as they think that is what is causing my movement problems, speech and swallowing problems and incontinence problems. I live on my own, my partner of 21 years left me because I am too disabled . My motorised wheelchair arrives soon but I can only use it in the house until the council put a ramp in place. you just have to get on with it as other people do not want to hear about these things. so try to stay positive all the best Sylviaxx

[Annie81963 in reply to sylviagreenhalgh]

Thanks 😊

[Renowife]

I also see a Movement Specialist. I drive two and a half hours each way every three months to visit with the specialist. Go to partnersinparkinsons.org to find a specialist near you.

[DianeF]

I initially saw a neurologist who quickly diagnosed me but provided me with quite a bit of information. I then saw the top movement specialist in our local movement disorder clinic for a second opinion who said, "well, you have Parkinson's and here's a prescription. I'll see you in 6 months. You'll live to be an old woman."No information about the disease, the clinic or the medication,which made me very ill. Needless to say I went back to the first neurologist who is willing to talk with me and see me more frequently.

[Stanwillis245 in reply to DianeF]

They really don't have much time to treat or train us on PD. There are many sites and publications that are available. Find a support group and attend regularly. PD is your Disease and you must own it, learn all you can and above all exercise. Between the PD specialist, support group and exercise I have turned my PD around. Best wishes to you.

[DianeF in reply to Stanwillis245]

Thanks. I should've have clarified my point. Credentials are fine for diagnosing but this doesn't necessarily mean that this is a doctor I feel confident in working with. By taking control of my disease, I expect a neurologist will give me information about medications they are prescribing as well as my disease. I expect them to answer questions I may have and listen to my concerns. The movement disorder specialist was dismissive at best. I do T'ai Chi, and yoga weekly, exercise daily for 1.5 hours daily at the gym(fast walking, cycling,lifting weights) and belong to a support group. I read something daily about this disease. I am involved in my community.I think I have done a great job of owing my Parkinson's but I still believe a working relationship with a medical professional who knows this disease is critical.

[Stanwillis245 in reply to DianeF]

It sounds like you are doing everything you can. I would find a different PD specialist if possible. For me it is a 2 hour to my specialist but well worth it about 3 times a year followed by a local Neurological group. I apologize for being presumptuous. Keep on keeping on.

[Annie81963 in reply to DianeF]

We have to look out for ourselves, thanks for sharing.

[Stanwillis245]

Please see a PD neurologist as soon as you can. It has made a world of difference for me. Best to you.

[MichaelOM]

I se a movement specialist and I strongly recommend it. but I live near near Chicago and go to RUSH. I don't know if movement specialists are available in more rural areas.

[stevie3]

I see a neurologist with a 'special interest' in PD. When I was diagnosed by the neurologist I now see in clinic, my GP wanted a second opinion so he referred me to a movement specialist. (Who confirmed the dx). None of the professionals who support me are interested in discussing alternatives, exercise etc., but I have learned a lot about it through this and other sites and try things out. This is not to decry the professionals - they're fine, just short of time. I'm considering spending some money that I have put aside when I'm further down the track on an appointment with a specialist who can give me some more time because that's the main issue for me - some time to ask questions.

[sunshineonacloudyday]

yes i see a neurologist who is s movement specialist too. He in fact was a pharmacist before be coming a neurologist.

[Annie81963]

Thank you everyone for your responses. I learned a lot today.

[eh110575]

Not anymore, I just try to find a neurologist that doesn't see 40 patients and a day! You cannot even get someone to answer the phone so you get a prescription refilled. I finally had to go up to the doctors office to see if they moved out or something? They just could not answer the phone because of so many calls. So now I am settling for any neurologist that has PA. They say there is a shortage of neurologist. I don't know if that is just Dallas Fort Worth or all over! PS it took me two weeks to get an RX refilled!

[Beckey]

Neurologist/Surgical movement disorder specialist.

[Peaches]

Hello. I see a movement disorder specialist. I changed from my neuro to go to a clinic that deals with movement disorders. I feel that they are much more informed about Parkinsons. My first guy was nice but he seemed to think that the reason I was depressed was because I was "grieving" my diagnosis and should talk to someone about it. The specialist put me on Wellbutrin and that has helped a lot. Also, the first guy told me that I could not be tremoring at night as "you don't tremor when you are sleeping." The specialist put me on a slow release Sinemet at bedtime which gets me through the night with no tremoring. I feel much more confident in my new situation. Hope you can find a good one.

[Annie81963 in reply to Peaches]

Hello, everyone is different and doctors don't know everything. When my dr increased my Sinemet it increased my tremors and she didn't believe me I was sitting in the room with my husband and he convinced her that it was true. She then said I believe you , it just never happens that way!

[hopedope]

I have had one visit with a movement disorder specialist and plan to continue seeing her alternating every 6 months with my neurologist whom I also like. She stresses exercise more than the neurologist and does seem very interested in PD.