Help- Auto immune symptoms difficult to specifically diagnose

[WPMOM]

Long story, try to make short. I have some sort of auto immune issue going on that first affected my hearing years ago with vertigo and fatigue. Caused HFSNHL in left ear and starting to occassionaly affect my right. Lay dormant for a few years then began again with increased tinnitus and fluctuating hearing loss,vertigo, disequilibrium, low grade fevers, night sweats,severe fatigue and inability to fully wake for at least 24 hours if not days as if sedated. Noticed seemed to increase flares during flu, virus, allergy season and with stress or increased physical exercise. Began to notice intermittent muscle and joint pains, activity and motion intolerance, ataxia, disequilibrium,inablility to focus, visual disturbances, confusion, inability to concentrate, remember simple things and occassionally unable to articulate what I am thinking or incomprehensible words. This is usually accompanied by LOC changes, sensitivity to light and sound, sedation, excessive sleepiness and extremity weakness and sometimes extreme meningitis like headache and neck pain.
I have had ANA reading usually at 1:320 both speckeled and homogenous, intermittent Type II Collagen antibodies around 70, DS DNA around 50 or normal, and an atypical ANCA pattern. My doctors were considering Cogans Syndrome but I do not have Keratitis only an occasional episcleritis. This used to be considered Atypical Cogan's but apparantly the medical community no longer considers this category Cogans dx. I had an MRA. My local Radiologist thought he saw several areas of stenosis but 2 other radiologists said it looked normal accept for some slight abnormalities in the circle of willis that is probably artifact? My sed rate is always very low around 2-3. Therefore they are not considering CNSV. Do you have any thoughts? Is Atypical Cogans and CNSV out of the picture? What about PACNS or BACNS? Or could I be dealing with Myalgic Encephalomyelitis/CFS and the cerebral sx are due to that and the metabolic abnormalities that occur?
Thank you

[jbaum27]

I would have an immune system complements tests run on your blood. Also have them run liver tests for bilirubin count. See a rheumotologist to see if you have FM. I have very similar symptoms and have Acoustic Neuroma, FM and an immune system deficiency. I went through ten years of these symptoms your describing before being diagnosed with an innate immune system deficiency. My problems starting with the vertigo as well.

[WPMOM]

Thanks for your response. I have been seeing a couple of rheumatologists but as you may know if it doesn't fall into a nice complete pattern like Lupus, they find it hard to deal with. It seems that people like us who have our hearing affected seem to have these "crossover" symptoms that do not seem to fall into a clear picture for them. I recently had an MRA that was questionable for Central Nervous System Vasculitis but they now say it is negative for CNSV. I have very severe symptoms involving my CNS and Level of Consciousness. After doing more of my own research, my symptoms do seem to fall into the category of Chronic Fatigue Syndrome or now they call it Myalgic Encephalomylepathy. My very low sed rate seems to correlate with this. CFS is the close relative of FM. Is your rheumatologist handling this? What part of the country are you from?

[jbaum27]

I am currently fighting for a referral to a rheumatologist from this new PCP. Not very cooperative. I've been waiting for weeks for a pre-auth on another MRI to check on Acoustic Neroma seen in MRI ten years ago. I live in Cincinnati, OH.

[PlateletGal]

Hi ! I am the Community Leader on the fibro / CFS board. Your symptoms do sound like they can fall into the CFS category. Welcome to check out our board... here are some diagnostic tests that can help your physician(s) diagnose you. Apparently ALL CFS patients are failing one test... the heart halter monitor test.


http://www.medhelp.org/health_pages/list?cid=39


Best,

PlateletGal