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Do I Have Parkinsons Or Not?

Do I Have Parkinsons Or Not?

One neurologist says I have Parkinson's and put me on Sinemet. Another neurologist from the same office says that I don't have it and thinks my neck, lower back and anxiety are what is causing problem's with my shaking and my walking. So he will be taking me off the Sinemet gradually to see if he can tell what my problem really is. I've also had other tests. My question is once I'm off the meds will I know whether I have the Parkinson's or not? If my symptoms stay the same and don't get… read more

posted January 30, 2019
A MyParkinsonsTeam Member

And here I come with a totally different answer all together. There is parkinsonism, which is an umbrella term for all sorts of Parkinson-like symptoms. Usually it's Parkinson's disease, the most common of the parkinsonisms. It's called idiopathic Parkinson's, meaning they don't know what is causing it. That makes up about 70% to 80% of people with these symptoms. However, certain medications and chemical exposure can cause the symptoms. But as a neurologist told me, in the end they're all treated much the same. When Sinemet doesn't help it really may just mean you need something else. Sinemet makes me dreadfully ill so I cannot take it. However, there are other drugs which can help. I use EMSAM, a 24 hour selegiline patch along with klonopin and ropinirole and a med for muscle relaxant for spasms. There are other ones as well because not everyone can take Sinemet. So even if the doctor calls it parkinsonism it won't make a difference in the long run. Only if the diagnosis ends up being something non-parkinsonism, something totally different, will it make a difference. Also remember that not everyone has the same symptoms, or to the same degree, so while we are similar we are not the same, so whether you get worse quickly, slowly or anywhere in between, it won't necessarily tell you much about your diagnosis except that you're moving at your own speed. I have had Parkinson's for 40 years now, and only in the last 2 years have I really noticed things are much worse. I hope this helped. Regardless of the diagnosis make sure you keep moving because it reduces stiffness and helps to reduce the speed at which the disease.
Hugs, and I truly hope you find a correct diagnosis.
Hugs,
Teresa

posted January 30, 2019
A MyParkinsonsTeam Member

@Cathieliz: I am unfamiliar Kenosha, WI. What large city are you near? i ask that because it is far better to get a neurologist
1.has a major back ground in Parkinsons
2. working out of a large hospital
3. working out of a university.

Did your primary care doctor refer you to this neurological group? If he did, go back to him/her and tell the doctor what happened AND that you are not only CONFUSED, but concerned for your proper care. Tell your PC-MD, that you need a neurologist who specializes in PD. I, personally am appalled that the two diagnosis are diametrically opposed!! Parkinsons is NOT black and white!!

Please let me know what you decide to do and any further outcome!! I am going into my 15 year with PD. I have read almost everything I can find on PD. I am not the be-all-and-end-all on the subject. I have not gone to be board certified, not do I have license to practice neurology.... I am wondering which one of the two doctors you saw follow in my footsteps!!'
Please keep me personally informed.

posted January 30, 2019
A MyParkinsonsTeam Member

@A MyParkinsonsTeam Member, the closest real answer the doctor can give without an autopsy on your brain is that you probably have MSA or whatever Parkinson they are considering. Once they say probably or possibly they will treat symptoms as they occur since their is nothing available to slow it down or cure it. If sinemet works at all, it won’t work long or we’ll usually, and if it doesn’t help you likely will be taken off of it. I’m on slot of meds, and the time may come when I need a feeding tube, wheelchair etc. The thing which scares me is when I choke on food or liquid. That is happening more now. As I understand it autonomic symptoms get worse over time; those need to be watched. I have 2 heart rhythm problems which seem to be worsening and I don’t know if kidneys are part of it, but I’m getting close to end stage kidney disease which will require dialysis. I’m in unfamiliar territory now. Choking more often but trying to avoid it. I try to stay on a soft or even liquid diet to try not to choke. I don’t go out unless someone is with me. Thinking and remembering have become harder, too. From here on I’m not sure what happens next. It seems like an accurate diagnosis would be helpful, but again, there is no certainty at this point. You can check multiple system atrophy online and learn more, but since each person is different the answers may seem to not apply, but they will more and more. No one has said which one I may because i have so many issues to address, like losing 62 pounds since C around Christmas. Even my diabetes is improving. It might help to write down changes you, or others notice, fir your doctor. Movement specialists should know what belongs and what doesn’t. Work hard to avoid falls; VERY V important to avoid falling if possible. On YouTube if you search PSP or PAF or MSA you should be able to find podcasts with a wealth of information from the specialists. I try to watch often to learn new info. And it helps knowing you’re not alone.
God be with you and your loved ones.
Hugs,
Teresa

posted September 22, 2021
A MyParkinsonsTeam Member

Did you get any improvement in symptoms when taking Sinemet? If the answer is yes, then you probably have PD. If no, then the second neurologist may have the right idea. Diagnosis is not always clear and easy, more a matter of trial and error. Good luck

Audrey

posted January 31, 2019
A MyParkinsonsTeam Member

I am just so frustrated. Family is trying to help me get better. They won’t believe it’s not something that gets better, just worse.,

posted February 9

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