Quote:
Originally Posted by cyclelops
Josh,
What did the neurosurgeon say?
I would encourage you to have biopsies. They can find many things in just the skin biopsy, such as amyloidosis. Also, for hereditary neuropathies, they can find out which one it is, if I am correct. The other thing is a muscle biopsy, for things such as myotonic dystrophy or other myopathies.
At one point they told me I had hereditary neuropathy, and I certainly was not thrilled to hear that. Turns out the autoimmune stuff is very stubborn as well, and I am just stuck with this. It isn't going away.
I went back and read that you have abnormal EMGs. I would check out the hereditary neuropathies and myopathies. Some ethnicities have an increased incidence of them. I think if you research this and bring studies to your doc, you may have better luck getting this diagnosis down.
Kitt knows a lot about hereditary neuropathies. There are also some really obscure ones. Check the neurowustl web site.
If you are having spasms, baclofen is a better drug than lorazepam, however, that too has issues, and you can't mix that with the opiates or you will get some degree of respiratory depression.
You have not been fully diagnosed, and need to get to a teaching hospital. You have neuropathy, but why? It is the why, that will bring about validation.
That said, no matter what you have short of terminal cancer, a lot of docs will not want to prescribe opiates, and really, they do cause a lot of autonomic issues. I have AN and opiates just about killed me, even tho I needed something for pain and asked for them and always used the responsibly. Also consider what happens if you have a car accident or any accident on these drugs.
Your primary may care more about you than you think. She doesn't want to see you dependent on meds.
When we don't want to hear something, we kill the messenger.
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My primary care doc is the one who started giving me Ativan, she thought that I should take it until I have a diagnosis because of the anxiety I had from the pain and the frustration of this illness.
Also, I'm not leaving her practice because of the drugs, to this day I take no controlled substances and while I'm in loads of pain, I am content with my neuro. I'm leaving her practice because of the way she treats me, I never asked for medications. She was the one to tell me to go to the ER if ever needed to because of the pain which the ER I go to is in the same network as her office, they're across the street from eachother. The only reason I took the medications was because I called and asked her *her staff* if it was okay, I called the next day just to tell them I went to the ER. I had a prescription for 15 and took maybe 3. She offered me opiates before that point and I refused them. I've never been to any doctor she hasn't referred me to in the past 11 years. In my entire life I've been to 3 doctors.
I can't afford to drive all over the country for a risky diagnosis, the Mayo clinic says 1/3 of SFN's are idiopathic and a lot of other medical centers say the idiopathic rate is even higher. My Neuro follows the testing standards of the Mayo clinic for 1/20th of the cost. I believe I'm in good hands as he's tested me for some pretty particular stuff (most of Liz Jane's spreadsheets.) We're still trying to find the cause, he's not giving up. I have no muscle involvement, yet anyways. I'm not finding a new GP for medication, I need a general practitioner that is friendly and polite, that cares for my feelings considering I pay them an arm and a leg.
I've talked to the ANA *American Nursing Association* concerning medication and ability to work. It's considered discrimination, I actually have a very good friend that is a RN, she's on fentanyl for neuropathy following Guilliam Barre Syndrome. We all need different treatments, none of us are the same. I would rather an RN take care of me that isn't in horrible pain because of medications than do sloppy work because she is in so much pain she can't think straight! I would never hide the fact that I took ANY medications from an employer. I don't think that me taking medication that I can tolerate would stop me from taking quality care of anyone. I'm not letting this condition change what I want out of my life, what if this isn't permanent?
I no longer take ativan, since I've gotten some of my pain under control I no longer need it and I've quit taking it myself. I never took it regularly, maybe twice a week.
Thanks for the help
