I am so frustrated!!! I just need to vent.
I was diagnosed with MS in 1997/1998 at the Mayo clinic. I've had symptoms that just don't relate so much to MS but seem to fit in with Lyme Disease instead. I'm not symptom surfing or hoping for the magical conversion from an incurable disease but I don't see what it would hurt to find out for sure.
Well, since I would have been infected with Lyme for so long, the silly little bacteria would most likely have morphed into different strains than they test for in the basic Lyme test (I've spoken with some Lyme support groups and gotten a plethera of information that has been very enlightening). But here is the catch: since the basic Lyme test came back negative, I can't get a referral to a clinic that would send the test to CA for a more extensive test. Also, no one wants to challenge the "almighty Mayo Clinic" in suggesting that their diagnosis may be wrong.
So, here I sit. I am staying on my Avonex and going to keep doing what I'm doing functioning from the perspective that I have MS but wouldn't that be unfortunate if it was actually Lyme disease all of this time and I have been going through all of this with the weakly shots and side effects and all the while treating the wrong illness? From what I understand, Lyme and MS symptoms appear very similar. I've also found out that Lyme tests can be extremely inaccurate and vary extensively from lab to lab.
I just got a call from my neuro today saying that he won't give me a referral because the lyme test he did came back negative so there is no justification for a referral to a different clinic and he refused to authorize the test at IGENIX in CA for the same reason. My question to him was "But, what would it hurt?". That didn't go over very well and I got a lecture about insurance fraud yada yada yada. How is a does a referral equate to insurance fraud????
Has anyone else gone through this and if so, please give me any advice! Thanks!!