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GreenT

Help with Diagnosis

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Hi, I am a 37-year old mother of 2 beautiful girls. I am a scientist by profession and use my hands a lot. I have been experiencing hand tremors for more than 18 months now. i also have severe neck, shoulder and feet pain and excessive fatigue. i cannot say which side is worse - sometimes i feel it is the right, but cannot say so confidently. i drag my feet when i walk rather than lifting them and have also started walking slower than usual. I now see my lower lip trembling for no reason and feel very conscious about myself at work.

 

I consulted an MDS who saw the tremors and suggested i take a DaT scan. That did not suggest PD, so the doctor concluded it was a case of dystonia and started me on Propranolol - high dose of this led to shortness-of-breath and i had to stop it. i was then prescribed Primidone (250 mg - half tablet once a day); i reacted badly to this also - slept for 2 days with haluucinations and woke up only to vomit! To get a second opinion, i went to another MDS, who totally does not think it is dystonia or even essential tremor. After 2 visits with him, he was able to see the tremors in my hand and my lips. He thinks it is a resting tremor, but is not yet ready to start PD medication. he suggests we wait for the symptoms to worsen. But as a busy working mother i find it frustrating and challenging to deal with things everyday.

 

Is it a common practice to wait for the symptoms to worsen or is there any other alternative? On one hand i read that it might be better to start medications earlier while i also agree that PD meds have their own set of side-effects. i have thought of getting another opinion, but honestly am too tired to do even that! My father was diagnosed with PD at age 52, but was able to lead a pretty normal life on meds until recently.

 

Please advise.

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My suggestion would be to take the DAT scan (actual scan on a disk) to another movement specialist and pin them down to be sure you don't have PD. You may also consider 23andMe testing or genetic testing through your doc since your dad had early onset PD and that puts you at risk.

 

If the DAT and genetics are negative you may want to consider physical therapy, occupational therapy, antidepressants, and some mild tremor medications. If positive then definitely starting dopaminergics could help symptoms. The treatment hinges on the diagnosis.

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Thank you for your reply Dr. Okun. Can you suggest an MDS in the NY/NJ area who will look at the DAT scan CD. one of the MDS we met just looked at the report and the other did not even do that. Things seem to be getting worse and i would like to get a diagnosis and start treatment. I thank you very much and would value your input .

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Call our helpline as there are a ton of providers qualified in that area. I suggest you take the CD ROM of the DAT scan to somewhere like Columbia, Mt. Sinai, Beth Israel, NYU or anywhere with a fellowship trained movement disorders specialist.

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