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Steph06
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Hello All,

I recently got from from seeing Dr. Grubb, who I loved, and I found out that not only do I have POTS but Dystonia as well. For anyone who does not know what Dystonia is, it is an neurological movement disorder in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures. If anyone has time they should look it up. I am happy that I received more answers but knowing that I am dealing with two chronic illnesses is very upsetting. Before I can start my meds to help with the dysontia, Dr. G increased my mestinon and wants me to wait 2-3wks to see how it helps me with my POTS symptoms first.

Does anyone else suffer from Dystonia?

Stephanie

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I'm glad you found out something important at the visit, although it wasn't what you wanted to hear, I am sure. But at least you know what you're dealing with which is half the battle, right?

I looked up Dystonia - were you experiencing any of the symptoms with it? How did Grubb discover it?

I have recently started Mestinon for my POTS and I think it's helping a bit. What dose did he put you on and does it seem to be helping?

Good luck with all this.

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I'm glad you found out something important at the visit, although it wasn't what you wanted to hear, I am sure. But at least you know what you're dealing with which is half the battle, right?

I looked up Dystonia - were you experiencing any of the symptoms with it? How did Grubb discover it?

I have recently started Mestinon for my POTS and I think it's helping a bit. What dose did he put you on and does it seem to be helping?

Good luck with all this.

While I was in his office my legs, neck, back, face and eyes were spasming really bad and he told me that is not associated with POTS. Just by seeing my symptoms he knew right away that is was Dystonia. As for the Mestinon he increased my dosage from 60mg to 180mg. It seems to be helping. What dosage are you on?

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