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My PCP says it’s a normal migraine with aura. He hasn’t really kept all my records from diverse specialists nor taken time to try to ID any type of pattern. I made an appointment to try to do so but it didn’t help. I’ve begun to take my own list of diagnoses (which include MS SFN and possible MCAS, hypermobility, and MPS, Tarlov cysts possible ankylosing spondylitis and lots of OA). I listed all the things next to names of doctors so that they don’t think I’m just a hypochondriac. I’m working full time so coordinating all this while trying to exercise use and sleep appropriately is very difficult. It’s even hard to know which condition to focus upon with my doctor appointments. Forums like this one help provide perspective by learning what has worked for others
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@jdp3
I know exactly what you are going thru. Too many disconnected doctors. They are to busy to really get into the trenches of complicated cases. They have become desensitized to suffering. They deal in quick fixes. No one wants to coordinate care anymore. If it requires follow up or research, forget about it. You are on your own.
The best you can do for yourself is research your own symptoms, get involved in reputable chat rooms and blogs like this one until you think you may be on to a possible diagnosis ( a long shot in know) then get a referral from your pcp to a specialist for that diagnosis to be evaluated. Hopefully, you will land somewhere like the Mayo Clinic. Then maybe you will get some help.