I am devastated. My blood tests don't prove autoimmune results, and instead of sending me to eye doc, doing lip biopsy, or whatever else they could do, they dropped me. He didn't even wait for the nerve study results, which are still on the way to him. Those tests prove nerve damage with no "normal" cause, like diabetes, etc.
I am getting to the point where I am not always able to function enough to get out to shop etc. I don't know what to do.
I'm UK so we have a different system, so I don't know if any of these suggestions will help, but I was diagnosed with severe dry eyes after having a normal eye test at a high street opticians- I mentioned the dry eyes, and they did a test to see what the TBUT time was (tear break up time) there and then, and suggested what eye drops etc. I needed. If you could get that done and find out how dry your eyes are, maybe your primary care doc could refer you to an ophthalmologist? Same with the lip biopsy- could you be referred to an ENT or dental clinic for a lip biopsy? Again, I don't know the US system, but in the UK dentists can refer you for specialist treatment, so maybe you could try that route for a lip biopsy? And also try getting a neurology referral with the results of the nerve study results?
How helpful is your primary care doc? Would they help you with referrals, or could you try a different rheumy? (It could be worth opening a new discussion to find any more knowledgeable rheumy's in your area?) I know that some people here have more knowledgeable reheumy's , who will treat the symptoms rather than the blood tests.
If you're able, it might be worth looking for as many bits of info or research support your case- that the blood tests aren't always positive- and take these with you to push your primary care doc. I think on all the Ben's friends sites it's a common thread- having to fight to get a diagnosis!
Jules G also did some info about being a pushy patient, which might be helpful- here's a link:
I have dry eye, gird, I've lost so many teeth from gird and dry mouth, I pulled the rest and an now getting dentures. I am plagued by light sensitivity, Migraine s, nerve pain in my hand and feet, and fatigue, and more.
I don't come on this sight much because it overwhelms me. I'm not used to being the one needing help, and I have nothing to offer as strength here. I'm just so tired, and hopeless right now.
The doc did blood tests, and when they came back neg, he dropped me. Didn't even bother to wait for the nerve study results I had a couple months ago, it shows damage to the nerves upper and lower. Didn't send me to eye doc, or ask about dental, even though I came in toothless. I have no history of drug abuse or anything like that, Im cetainly not asking for pain meds, so why would he drop me without even seeing the nerve test? I keep thinking docs are supposed to help. Keep getting proven wrong.
Sorry about the grammatical errors, I'm typing two fingered on a 7" kindle, I'm gonna trust you can figure out what I'm saying
Thanks for the reply and info. Thanks for understanding my need to freak out a bit. Sometimes I feel so small fighting off giant things I don't understand.
And having to battle so much when you're already weary doesn't help! Try to keep strong, and hope that you can get somewhere with your doctors/ tests. Has your primary care doctor or whoever suggested the nerve function tests gone through the results with you?
It is a good place to vent- at least everyone understands on here!