View Full Version : Why so difficult to diagnose
11-25-2009, 11:25 PM
I have been on this site for almost 2 years. I started in the neuropathy section. Things have been happening that now I dont know what section I belong in. Neither do my doctors which is very confusing. I have documented snf - both feet. I was on prednisone which kept it under control for some time. i wanted to come off due to the long term side effects. Cymbalta helped me do that. However, since being off the steroids, my ANA levels have risen from negative to 1:640 - ACE levels high. C3 complement high. levels high which indicate sarcoidosis or wegeners something. my chest xray clear. now i am having problems with my eyes. Dr afraid i had a stroke, but opthamalogist diagnosed nystagmus. i have to see a neuro -opthomalogist on monday and the rheumy after. left eye is sore -something going on.
i just dont understand why it is so difficult for the 7 mds i am seeing to figure out what the underlying disease is and how to treat it, rather than putting me back on steroids and neurontin and treating the symptoms which they have done. I dont want to treat symptoms..I want to know what autoimmune issue i have.
there has to be a better way... any suggestions?
11-26-2009, 09:12 PM
.....I have documented snf - both feet.
......I dont want to treat symptoms..I want to know what autoimmune issue i have.
there has to be a better way... any suggestions?
What is SNF?
If you could sever some level of cause would that be better than treating symptoms?
11-26-2009, 11:47 PM
Try this from smallfiberneuropathy.net:
After you convince yourself of the possibility, we can talk about what to do.
12-10-2009, 01:05 PM
I have been on the board for many years. I too have SNF.
I have a tentative diagnosis of SjS, based on ANA and labial biopsy...however, my ANA is speckled and nucleolar and very high.
Your labs seem to indicate Sarcoidosis. My neuro runs a neurosarc clinic, if you want more info, PM me.
I just posted on the PN forum, where I usually 'live'. I have the same frustration, it seems that if you go to an academic center, they feel you must meet every criteria.
12-10-2009, 01:16 PM
One other thing that has bugged me about my case, it that they have not run the specific antibodies other than the usual basic panel, such as anti scl 70, ssa, ssb, antism stuff.
There are several dozen other things they need to test for. I hope this next clinic appt. they do that. I saw one rheum in a private clinic and got the first + ANA, (nucleolar/speckled). Then I went to the rheum clinc at my academic center, and was sent away with plaquenil and NO blood work. I had a fit and wanted to see a new rheum and had to go to hell and back to get assigned a new doc. I got the new doc and she did bloodwork, telling me it would likely be negative. She called me a few days after the results came in the mail and was kinda apologetic. That lab work came back + as well, so, now this is the second appt. with her.
My neuro has been handling my IVIG up to now, and frankly he seems to advocate for me more than any one has. I hope they all get on board now, and stop all the interdepartmental bickering. I am tired of it and feel caught in the middle.
01-24-2010, 12:55 AM
since last post all the doctors and tests i have been thru initially were leaning toward sarcoidosis, but now it is some type of vasculitis.. undefined. c-anca vasculitis... rheumy started me on imuran which i had a reaction to.. so now i am just in pain..all over.. i cant even drug myself to sleep. anyone have vasculitis experiences that might help? i am in ny... i cant live this way..
01-24-2010, 12:46 PM
First things first....relax a bit. You WILL be OK. Getting diagnosed with neuropathy is always a shock. It opens up so many possibilities and some of them seem so dire, but, you know what??? It all settles down a bit, and, you do learn to live with it. It is a lot like an unwelcome guest at your home, except it isn't leaving, and your only choice is to make some kind of peace with it.
I see by your location you are potentially in an area endemic for Lyme? Have you had a good work up for this?
I had Lyme, at one time, and it is possible that it contributed in no small way to what I have now....which is a poorly defined autoimmune condition with some similarity to Sjogren's without the + SSA SSB.
Here is some info on C ANCA, keep in mind, not every one has the worst case scenario.
I am on IVIg, but I have something different, and they monitor my kidney function every month, and if it goes to pot, I can't have the infusion. I have had a low GFR in the past. It is fine now.
On pain....opiates can have a stimulating effect preventing sleep. Often the meds we take can be our worst enemy.
Oh, and you can be in either forum. I am in several, and they all fit!
01-24-2010, 09:18 PM
the auto-immune and other PN issues that it's entirely dependent on the Clinical Experiences and resources [such as mentors] any docs have? Believe me, once PN gets to the 'unique stages' beyond ideopathic basics.... It gets totally squirrelley. So much depends on the quality of the tests and who processes the tests, and how the tests are transported to the testors, not to mention the quality of HOW the tests were done!
Next is pain control? Some of us learn to tolerate more than we thot we could? Rite now, I'm off such meds as neurontin for other reasons and I've found they really didn't DO that much when I have been in pain! But, we are all different in that quarter - After all the medical community can't even define PAIN categories other than thru 'happy faces'?
I for one, do NOT do happy faces! Come on folks, there are no objective or quantatative standards?
Be patient, polite and PERSISTENT with your docs about finding out not what so much that 'you have' as much as 'WHAT THEY CAN HELP you with'! Getting them to zero in into some medical areas will be the key to treatments and to maybe finding some relief! Whenever a doc goes 'maybe smurfiloff'? Be firm and ask him to write that down for you? Docs love to mumble at times those BIG words!
BTW? I quit the pain meds because the continuous kinds weren't working long term? And I Hurt equally off as on the meds. I learned that also in the past year with a bad injury? I was on morheine? I STILL HURT? I simply didn't care because my mind was fogged.
Listen to your body! It will tell you if somethings good or not good for either the long or short term. Follow your instincts in this regard in seeking help and treatments. Some do work and lower pain levels a 'bit'. Most do not eliminate them. As long as nerves WORK and COMPLAIN? to me that's a good sign that there is hope they can repair and work better again!
I've had set-backs myself in this quarter? But I AM NOT GIVING UP! Nor should YOU! :hug::hug:'s - j
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