[Geraldine]

Very long thread:

My rheum said I have a neuropathy and gave me elavil. I also have an autoimmune disease. I am also being treated by a chiropractor for a previous neck injury, plus an aggravated neck from a rear-ending.

I see a LOT of doctors, including an acupuncturist, my gyne (more than I want to) and a hormone/anti-aging doctor (because I couldn't get into an endo).

I have had tingling in my feet and face for a couple of years, but minor (compared to now), nothing I couldn't deal with... although it scared me. I actually would get vaginal burning at the same time as the foot sole burning. I do have other issues that seem to coincide with monthly issues, and I have even had hot flashes at 36 years old. I was told at one point I had low estrogen (no actual testing, just an opinion from a vulva/gyne specialist). And told I have vulvodynia.

Then I paid lots of money to the hormone doctor for testing. My tests revealed low thyroid (still in range but for autoimmune possible needing help) and low progesterone. I have been on progesterone for almost 3 months now and I do believe I AM feeling better cyclicly. I also have been prescribed VIT B12/B complex injections (I know I will switch to the methyl B tablet soon). And I'm on multiple chinese herbals that have helped.

Problem is... I'm broke. I don't have real insurance. My insurance is Blue Cross but it's only a discount plan for people who can't get insurance because of pre-existing conditions. So actually, some doctors can actually cost less if I go as un-insured or self-pay. My insurance pays $50 and I pay the rest.

I tried to explain this to the neuro office I was supposed to go to, and they did not get it... or refused to get it. So I cancelled the appointment. Thing is, most of my research says I will probably have a form of neuropathy that is not going to show up on a nerve conduction test, probably due to my autoimmune condition. And most neuros will prescribe me the same stuff that my rheum has... elavil... or gabapentin.. or cymbalta or something similar. I cannot afford MRIs or Nerve Conduction Studies. I cannot afford another "first patient office visit" that is over $300. I'm still paying one of my gynes plus my podiatrist. I really hate that I am expected to go to a neurologist and get tests done when I make too much money to get help, but not enough money to afford it. (And my house is worth less than twice what I owe).

I already took the B injection so I don't think I can get tested for vit B either. I do not know what I should do, I need some advice and it can't come from my Mom or my Husband. At this point I decided I would cancel my appt., see my rheum later this month (she prescribed me elavil, mention how much better my mood is, and show her the white spot on my tongue) and make an appointment for my annual gyne appt (already late on that) plus try to find a GENERAL PRACTITIONER who may be able to give me advice on what to do when I have specific problems? Or treat me him/herself? Or help me find something affordable? Like a University or discount program? I also will have to cancel my followup with my hormone doc, and my chiro appts are ending soon.

I notice most people have gone to a neuro, but I honestly am terrified because I do not have the money for the tests that seem definite. I also know how hard it was to get any kind of diagnosis from my rheum, and then how I couldn't get hormone tests from ANYBODY. How the gynes seem to know nothing unless I want to share my sex life with them - which is only now okay because I got married - how the only docs who ever listen to me are my chiro and acupuncturist and hormone docs... not your regular Western docs at all.

In all honesty I wish I could quit all my appointments and just see my acupuncturist. And he isn't expensive. But I don't feel I can quit my autoimmune drug plaquenil, I don't feel I can quit the elavil right now (btw I read the level I'm on is not supposed to affect your mood but that HAS to be bull - because my mood is actually 5 times better). And I obviously need supplements.

Did I do the right thing? Does anyone know about any programs or WAYS to ask the docs for help on the tests? Where can I get these tests or should I seek out a University? I am in the Tampa area so we do have quite a few, plus I have been to Gainesville for my gyne specialist and gotten self-pay discounts there. That, my local gyne and my chiro is how I know self-pay can actually cost less than insurance. Over 400 with insurance vs. $160 with self-pay at one.

BTW, my feet are MUCH better than before, however I can only wear sneakers and orthotics or two pair socks/no shoes inside. I have to exclude sandals and boots, and slippers. If my feet were as bad as in November, I would be at the neuro for sure. They are still getting cold and numb, just not as bad. And my raynaud's IS attacking my hands as well. This is another thought... I do 100% believe I have a vascular condition, and am not sure if I need to see a neuro OR a vascular specialist (pod said both things were affecting me). I feel like this could all be vascular, maybe even lupus - very cold and veins spreading too).

I would love to hear your advice.

I hope you all had a good New Year! I did have a good Christmas and New Year. Just back to reality now.

Geraldine

[malawigirl08]

I have been attending a neuro and it hasn't made a blind bit of difference, I am still 'Ideopathic'. My care hasn't been altered in any way by attending this specialist so don't feel bad that you have decided to cancel -you are been looked after by others so that is important. Good luck