Movement Disorder Specialist

jbphotonut

Regular Member

Joined : Jul 2006

Posts : 26

Posted 7/12/2006 2:37 PM (GMT 0)

Greetings!

I am new to the "HealingWell" chat. I was diagnosed with early onset PD back in January of this year. I was placed on Stalevo and Sinemet and have been doing very well, in fact most people would never know that I have this disease. However, I am being referred to a movement disorder specialist and my neurologist and I have decided to slowly take me off my meds before I go to the specialist so that they can get a good picture of my symptoms without the meds. (Otherwise there is not much to see.)

Has anyone else ever gone through being removed from all meds and then gone back on them? My main concern is that when I was first placed on the meds I was very sick for about 3 months and lost a large amount of weight. (Not that I minded loosing the weight, it was a pleasant side-effect; but the sickness was almost to the point of debilitating me.)

Also, if anyone has been to a movement disorder specialist and could give me some idea of what they may do differently than the neurologist I would appreciate hearing from you.

THANKS! And, God Bless you all!

Steve R

New Member

Joined : Jun 2006

Posts : 8

Posted 7/12/2006 4:47 PM (GMT 0)

JB,

I was diagnosed with PD in March by a movement disorder specialist. He seemed more knowledgeable about PD then my neurologist and sent me for an MRI. My only symtom is a tremor in one hand. The MRI was just to eliminate any othet potential disorders. I'm trying my best to stay off meds and taking only selegiline and CoQ10, both of which are supposed to slow down the onset of PD. I also exercise a lot. Good luck to you!

els

Veteran Member

Joined : Oct 2005

Posts : 4033

Posted 7/15/2006 5:26 PM (GMT 0)

Hi ya jb, I have MSA (multiple system atrophy) and saw a MDS in Tenn, I live in Missouri. I was prior seeing a neurologist for MS which I have had for 5 yrs. I dont take any of the meds you mentioned or any other parkinson's meds as I am already on so many others. I do take 2 meds for my blood pressure as I have orthostatic hypotension because of the MSA. I didnt have to go off of my meds for the MDS to form a diagnosis. I had a tilt table test done, and lots of blood work and genetic testing. I couldnt have a MRI or Pet Scan as I have a pacemaker implant due to bradycardia (low heart rate) which the MSA has also caused. As for your medications your doctor of course will know and have the best advice for you. But your medical records should go to the MDS showing what tests were done prior to you starting these meds and coming to your diagnosis. I am not too sure why a physician would want to put you through all those symptoms just for a second opinion. Please do keep us updated on how your doing and what happens.

lizzy4451

Forum Moderator

Joined : Jun 2005

Posts : 476

Posted 7/18/2006 3:51 AM (GMT 0)

JB, I go to a movement disorder specialist (MDS) that is fabulous. An MDS is more knowledgeable in movement disorders like PD. It's a neuro with a specialty. Mine participates in many studies, so knows what's in the pipeline and always current with studies. Plus ... she can talk in laymen's terms and listens to me.

You mentioned you are taking Sinemet and/or Stalevo (basically Sinemet with Comtan) and that you are recently diagnosed. As a person starting out on PD meds, I would strongly encourage you to educate yourself on the side effects and effectiveness of Stalevo/Sinemet. Everyone has to make their choice re: priorities.

lizzy4451

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