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Is anyone using Rytary?

Parkinson's Disease | Last Active: May 16 4:54pm | Replies (116)

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@tab70

I was diagnosed in 2019 i think with Parkinsons, had tremors on one side but then it developed on both sides then I got tardive dyskinesia not sure if parkinson caused it or a medicine that I was taking for depression. My doctor who is a neurologist started me on carbadoba levadopa not sure how to spell it . then I was put on Rytary and Im up to three pills three times a day 36.25-145 mg cpcr And then I started waking up and the tremors were really bad so he started me on I cant remember how to spell it but it was entomine honestly i forgot how to spell it but it was suppose to help the tremors in between each dosage and it did but three weeks afterwards i started have severe panic attacks that i went to the hospital seven times within four months. They took me off of it and they\ went away then just last month after six years they are telling me I dont have parkinsons that I have essential tremors, My original doctor sent me to his partner whisch is a movement disorder doctor so I had a Dat scan and it said I do niot have parkinsons not they are weaning me off my Rytary plus my Austedo and Im scared to death on whats going to happen to me as I take more each month or whatever away from my body, I had tremors arms hands and legs, then the TD is going to be terrrible I wont want to keave my apt I look like a freak with all m y moivements back anda I dion;t kjnow what they are going to pput me on but Im scared. I'm sorry I wrote so much and the spelling is getting bad because Im nervous about it all. Im scared I wouldnt wish this on my worst enemy.

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Replies to "I was diagnosed in 2019 i think with Parkinsons, had tremors on one side but then..."

Hug to you. Essential Tremor has treatment options (way more than PD)…please seek out an informed Neurologist. You’ve sure been through it—please don’t despair. Seek clear answers and I’m glad you wrote.

Hello @tab70 and welcome to Mayo Connect! I feel for your situation as I understand how difficult it is to get a correct diagnosis for neurological problems. Neurological issues have symptoms that overlap, and this makes it difficult for even trained doctors to figure out the right diagnosis and treatment.

I've also been diagnosed with PD, but a DAT scan did not show any problem. However, when I've tried to go off the medication, I have movement problems, so I continue with the Carbidopa/Levodopa medication to control my symptoms. There is also a skin biopsy test that is used to diagnose PD. If you are interested in that, you might discuss this with your doctor.

I agree with the post from @katrii that you have been through a lot, and please don't despair, but keep seeking answers!

Will you continue to post and let me know how you are doing?