I finaly scheduled a appointment with a doctor recommended on this group, Dr Joshua Alexander, heard he is good with EM. He is now with Scripps La Jolla.
My old neurologist did not want to treat me, he just diagnosed me, and sent me packing. Hopefully this one will be more hands on.
I have both erythromyalgia and Raynaud’s, so either real hot or real cold, hard to treat, if I get my feet to cold, I go into Raynaud’s, to hot it goes to EM.
May get another skin biopsy for SFN, I was just over the nerve fiber count a few years ago.
Have many of you been dx’d with small fiber neuropathy?
I have both also. Just did my punch test last week for SFN. Waiting on results. Genetics test came in on SC9NA no mutation gaps or variations. EM considered secondary now. I am suspicious that Raynauds is also secondary. New neurologist and GP think there is autoimmune disease but nothing confirmed because blood work all normal. They want to do an EMG because of muscle weakness and spasms. Rule out any other neurologic conditions. My Fibromyalgia maybe SFN I will let you know next week. Let us know what your new neuro says.
Interesting, he tested me for SFN, poking and prodding, sticking and thumping… He does not think it is SFN! He is thinking it is possibly a pinched nerve in the spine??? I have it bilarerally for 32 years, I don’t see how that would be possible, but we shall see. Heis going to look at all my spinal imaging before deciding what further tests to do. I have all the aymptoms of SFN but no neuropathy, strange.
May do the tilt table test and the sweat test, but will have to pay cash, because insurance will not pay for it.
He is putting me on a anti-inflammation diet, no dairy, low carb and gluten free (already am), for 90 days, I am already hungry!
Also getting Ultrasound imaging of both arms, vascular and nerves. I have already had surgeries for cubital and carpel tunnel release, so maybe it is a nerve thing?
Let me know whatthey come up with for you!
Why won’t insurance cover it? Was it submitted and denied? If so, you can then appeal the denial. You never know, it could be covered! Never take the first “not covered” as the final answer.
I’ve worked in the American health industry for 25+ years, trust me on this!
I imagine the neurologist has requested the test, only to be turned down several times, it is only Blue Shield and Blue Cross, they are worthless.
The same insurance that tried get out of paying for my brothers Pancriatic cancer surgery? Yes, I was not surprised, every one of my doctors tells me the same thing about how they no claim everything. They have been even worse, now that I am costing them $40,000 a year with my Remicade infusions…
They will not pay for my SIJ ablasions, I had to pay cash for that too… I guess I am lucky they are paying some of the infusion cost.
Keep in mind, I am in California, the insurance here is crazy, I had my pain Doctor say they are no longer taking my Platinum PPO insurance, because they cannot afford to keep the doors open, with how little they pay out. I pay $1,800 a month, and it turns outit is a IFP instead of a PPO.
I had forgotten it was YOU with all the crazy insurance stuff and that stupid “mirror” plan that CA allows… UGH. I wish I had some other suggestions for you but I don’t.
You weren’t able to find a more reasonable plan with open enrollment?
This is going to sound flip and believe me, I don’t intend it that way, but, have you considered leaving the state?
I just pay cash for the procedures they don’t cover. I am reinbursed for all my medical costs, so not a problem, just a hassle dealing with the crazy system here.
I hope your new Doctor is good. I just moved from SD to Iowa
Please keep us updated with your progress.