| FAQ/Help |
| Calendar |
| Search |
| Today's Posts |
01-23-2009, 10:07 PM
|
#1 | |||
|
||||
|
Member
|
After 15+ years... 3 PCPs..all helpful.. 3 neuros..
(one MS.. one for Seizures/Narcolepsy/Sleep disorders) 2 Rhuematologists..I find the NEURO from HEAVEN. who specializes in neuro muscular and autonomic disorders.. he listened.. he validated me. Remember in 2004 I was told by MS neuro.. "I will treat this as MS (after ruling out the mimics). Then no..I dont think it is..then I never rule it out..but adds SOMETHING very serious is going on. So..I start researching autonomic disorders.. and yes the danger is diagnosing yourself. One Rheumy said I just had too many signs in spite of neg lab results so she DX Sjogren.. similar to MS with terrible DRY eyes.. Mouth..ears and internal organs..fatigue..etc. The next Rheumy then takes that Dx away saying no cuz your labs are not showing Sjogrens..but maybe its an autonomic problem that is causing dryness..ok..ok...getting warmer.. Get a new job.. new insurance.. start ALL over finding a PCP etc. I swore off all specialists..what can I say. New PCP says.. are they sure its not MS?? Are they sure its not also seizures?? So.. she refers me to this specialist.. the ONLY one with an autonomic testing lab..as HER mother also had a complex case and he was so thorough. Finally see him.. immediately he apologizes for keeping me waiting.. waiting?? Maybe 5..8 mins thats all. HE listened.. he knew something was wrong.. a lot of somethings. He hears all my experiences.. NEVER cutting me off.. or stepping over me. He had read ALL my records prior to my visit. and tells me.. You are right.. you do have an autonomic disorder..we both agree so I dont have to prove it to you, but I do have to measure it.. AND. I think you have an autoimmune disorder.. Sjogrens.. so I need a lip biopsy for that. AND.. migraines in the Basilar artery part of brain.. could be why I have so many lesions. AND.. he will test for NARCOLEPSY with Cataplexy..which the last neuro was in the middle of trying to DX. You see I am "spacing out" for seconds at a time... missing information.. I have apnea at night AND during the daytime.. I have episodes where my HR/BP go whacko.. which leaves me so weak I can no longer mover my arms.. or legs.. or keep my eyes open.. I look unresponsive.. but.. I can HEAR. I am totally wiped out and my speech and cognition is awful. SO FINALLY.. WHEW.. I was soo relieved.. How WONDERFUL for someone to listen.. to validate all my years of being dismissed in ERs..misjudged by neuros who were tying to make me fit (or not)into their speciality. I would be no where without ALL YOUR support.. trust me. Unfortunately my symptoms are growing..changing.. winter and my job are getting to me. I only work.. rest.. and dread getting up each day..but I keep my attitude positive. So a BIG THANK YOU guys and gals!! HANG IN THERE if you are not DX.. there IS something wrong.. it just has NO NAME yet. Best to you.. may random acts of kindness be yours.. and soon  warmly, Jan
__________________
Yes I believe in miracles~!! |
|||
|
 Reply With Quote
|
|
|
Similar Threads
|
||||
| Thread | Forum | |||
| Maybe a diagnosis finally | Parkinson's Disease | |||
| I Finally Got My Diagnosis | Thoracic Outlet Syndrome | |||
| FINALLY, a decent neuro willing to take my crappy insurance!!! | Multiple Sclerosis | |||
| A Diagnosis, Finally! | Women's Health | |||
| 20 years and finally maybe a diagnosis | Trigeminal Neuralgia | |||
New neuro = new diagnosis.. Finally!!
Threaded Mode