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Hi every one. I am 25, and have been searching for a diagnosis since last year. However, this has gone way past the point I thought it would. When I began looking, I thought I had fibromyalgia, or at the worst MS. However, when a doctor (not a neurologist) saw my movements, she thought is was chorea (form of dystonia) and told me I might have Huntington's. The neurologist I was sent to never put much stock in this, and did not test for it. However, he now believes that I have Parkinson's, because when he saw me one day I had motor tics, trouble walking, and a resting tremor. Before that day, I never noticed a tremor, and I had been keeping eye out for one. I've dealt with the rest for over a year. 

I am having trouble accepting this diagnosis, and I don't know if it is denial, or if I need to get a second opinion. However, I do not know how to get one. The insurance I have won't cover me going to just any doctor, and I think this is the only nuero that I can go to. Does anyone know how much something like that might cost? 

I go back and forth on whether or not the medication helps. I am ALWAYS in a lot of body pain- this is why I thought I had fibromyalgia - and the sinmet seems to help this some. Does anyone else experience that? I also have bad balance, slurred speech, stiffness, muscle spasms, and chronic migraines. I am easily mistaken for drunk, because of the way I move and speak. There are times when my ability to think is about the same level as someone who is drunk. I have thought for a while that this is part of the migraines, which I have dealt with since childhood. But I am curious to know if any one else deals with something similar. 

Thanks!

 

 

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Welcome, Nikki. You've been on a merry-go-round in the past year!

It sounds like you need to see a Movement Disorders Specialist (MDS) to get things sorted out. Check to see if your insurance will cover one. MDS are neurologists with extra years of training in PD and other movement disorders. You can call the PD Helpline listed on the home page of this website to get assistance in finding one that your insurance will cover.

Best wishes,

Dianne      

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1 hour ago, Beau's Mom said:

Welcome, Nikki. You've been on a merry-go-round in the past year!

It sounds like you need to see a Movement Disorders Specialist (MDS) to get things sorted out. Check to see if your insurance will cover one. MDS are neurologists with extra years of training in PD and other movement disorders. You can call the PD Helpline listed on the home page of this website to get assistance in finding one that your insurance will cover.

Best wishes,

Dianne      

 I Agree!

 

LAD

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I already know that it wont, unless I can get the neurologist to refer me and even then its iffy. This insurance is a weird type thats below even Medicaid. (Its extreamly local).

To top it off, even if there is the slightest chance that this is a possibility, I do not know if I can get my doc to agree, because I have a hard time talking with him. Yet, if I manage to speak, I might accidentally be too blunt and insult him. Which I dont think would be good.

Sorry if I wasnt clear enough before. This is why I asked if anyone knew how much it would cost to see one out of pocket. Also, I’m in FL and I’ve heard some medical expenses are higher here?

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If possible, I  would find a dr you are comfortable with about everything. You are very young - having that be a good relationship is important. 

 

LAD

Edited by LAD

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Dr. Okun, the MDS who answers questions in the Ask the Doctor section of this forum, is in Florida. He could point you in the right direction. 

Dianne  

 

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