Hi all
I have some questions about how the MDA clinic works. Let me tell my story and see what you think

I was diagnosed in May by Dr Franklin in St Pete via an ER visit and hospital stay. I saw his nurse practitioner in June and was told that he had no appointments open until Oct but I could be seen sooner via the. MDA clinic held at his office twice a month. I did the paperwork and got an appointment. For 8/21.

In the meantime I got the flu and my MG symptoms started getting worsen including new swollowing issues. I called Dr Franklin's office for guidance and to get my mestinon dose increased. I was told I had to be seen before they would do that. I saw the PA and got my dosage increase. I told the receptionist I wanted to keep my MDA clinic appointment with Dr Franklin since I had much more to discuss about my treatment plan. The office staff said they don't have anything to do with MDA appointments.

Today the MDA clinic called and said Dr Franklin's office had called them to cancel my appointment for next week since I had just been seen privately. I could see Dr Franklin in Nov at the MDA clinic. I was surprised and told the medical coordinator that I did not understand this. I was told that my insurance won't pay to be seen so soon. I told her that I would pay cash. I just need to see the doctor. They are calling the doctors office back to check on this.

I am confused and stressed by this whole thing. Any insights?
Thanks
Sandy

In my experience, MDA works just like any doctor visit, but the MDA picks up the tab after insurance pays its portion. It sounds like your insurance company is calling the shots and doesn't want to pay for more than one specialist visit within a certain amount of time.

Once you actually go to the "MDA clinic" the doc there will be able to dictate the frequency needed, etc. I think once you finally do get in, you will find it works fine--you are just having somewhat of a rough start.

Hang in there. Maybe some others will be able to offer more insight. Oh, and BTW, the cash price of a neuro visit at my MDA clinic is $250 for a brief appt.

I heard back from the MDA medical co-ordinator. They are going to see me on 8/21 to get me started in the system. (Yahoo)

This whole process is so confusing to me. I have no idea what my plan of treatment is, what level of function should I expect with treatment or when do I call for help and who to call. I am hoping to get more insight at this appointment.

I have only had one antibody test and it was negative. Should I expect to be tested for the other antibodies as well? I have had a positive tensilon test and neg Rep stim test.
I tried to ask the PA about all this but she just answered "all good questions".

Thanks 4- eyes for your answer. I am hoping it will all become clear soon. I just want to feel better and be doing better. I can barely get through. 2 days a week at work. It has to get better than this

When I got to the neuro/MDA clinic I now use, I was on my 3rd neuro. They re-did EVERY test that had been done, plus added more. The first appt lasted 6 hours. Of course, you may not have the same experience.

I left that day with a prescription, some recommendations, and a follow up appointment time. I've been at this almost 15 years now and no one has discussed what their goal was for treatment, much less a plan for remission. I think MG is such a widely varied and sometimes brutal disease that the true goal is just to keep our heads above water sometimes, and if you get a great result, that's just gravy. It's important to be open to treatments available and make choices (and accept consequences of those choices) accordingly.

I am MuSK positive. People with MuSK MG tend to do pretty darn well with plasmapharesis. However, my gut (or my fear) tells me to avoid it, and I have. I realize my choice may be impacting my function. I may not be doing "as" well as I could possibly. That's not my doctor's fault or anyone else's...it's my choice. I keep on top of research and I have a doctor who works with me. Goals change depending on the situation and events going on in my life at the time. At this point I have a pretty good idea what does and does not work for me...but again, it's taken 15 years to get to this point.

I'm glad you got that appt, Sandy. The calendar shouldn't be dictating our need for treatment, and I am happy the folks at the MDA clinic realize it!

Good luck.