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-   -   questions about MDA clinic (https://www.neurotalk.org/myasthenia-gravis/189463-questions-mda-clinic.html)

sandy56 06-04-2013 07:07 AM

questions about MDA clinic
 
Hi
Does anyone out there go to a MDA clinic for treatment? My Neuro doc has told me to see him there from now on. I am not sure why he wants me to do this as apposed to just seeing him at his office. I have insurance (tricare prime) but need referrals to see him.

My NM doctor treats at the clinic in St Pete. I was newly diagnosed last month after an ER visit. I had a follow up visit with the NP 2 weeks later. The earliest appt at the MDA clinic is 8/21. I was told that I can only be seen at the clinic every other month. I have concerns that is too long before being seen again.

I guess I am just not clear how the clinic works. The answers from the person I spoke to at the clinic were not very helpful. Any help would be appreciated
Sandy:confused:

4-eyes 06-04-2013 09:15 AM

I've always gone to an MDA clinic. It's just part of the neuro's office, which is a huge neuromuscular clinic run by a huge university medical school/teaching hospitals.

Every other month sounds more than sufficient to be seen. I have rarely gone less than 3 mos between visits, even when I was severely affected. I use email to communicate with my doctor and the few times when I've been "in trouble" with the MG I was seen--never forced to wait.

Once you get started on a protocol, even a successful one, you will have ups and downs with symptoms. Calling every time you have a bad day is not necessary or welcomed by the doctor, but when something is different or rapidly deteriorating, a call or email is warranted. You should probably ask your doctor what he considers worthy of a call.

The best part--you don't have to pay a dime for the neurologist's services. Meds and other stuff you may need, however will cost you money.

Hope this helps a little.

sandy56 06-04-2013 12:07 PM

thanks
 
Thanks. This is all so new to me. I feel better about the MDA clinic.

When I can finally see the doctor I will ask when and how to communicate with him. Last time I was in his office,he had agreed to let me start tapering off prednisone at my next appt. I still plan to do so this month. I am not sure where treatment will go from there.

I appreciate the veterans helping out us newbies. :grouphug:

Sandy


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