Reply To: DX-Ployneuritis of Unknown etiology?

Anonymous
October 4, 2012 at 2:14 am

I still plan to see the Neuro on the 17th, however I’m annoyed that I’ve had to get so many other opinions.My illness seems to progressing quickly at this point.  My GP just said Anxiety for over a year(if this had been GBS I’d not be in a good spot at this point.) Every-time I got another Neuropathy diagnosis.I take that paperwork in to my GP(as if to say in your face.) When I got prescribed the prednisone I did the same thing(He wouldn’t give me immunosuppressant treatment even on a trial basis(I had to go to another doctor for that).He should’ve diagnosed/suspected a serious neurological disorder much more quickly.Now due to the polyneuritis/polyneuropathy I have severe stomach & GI issues(Acid reflux/bowel problems,muscle atrophy/weakness, tremors, cardiac involvement, Urinary overflow/incontinence, breathing difficulty.etc I doubt I’ll ever get a formal CIDP diagnosis from any Neurologist( In August a saw  Neuromuscular specialist who wanted to  give a whole work-up that she would space out over an additional 6 months to a year before telling me anything at all.I wouldn’t give her the pleasure of not telling me anything so it went sour.However she did mention that I had symptoms related to the peripheral & Central nervous systems(but that she felt my biggest problem was the anxiety,of course I fired her) .I’ve repeatedly heard anxiety based on the fact Neuropathy is hard to diagnose & due to my age. However CIDP often effects young men & It can cause changes to the Central Nervous System.For me it was the Neuromuscular symptoms that came first,then I developed anxiety issues,Then Stomach,GI problems, Cardiac issues. I think the anxiety is from the physical symptoms & pain themselves.The Pain I go through on a daily basis is so bad now I have symptoms of depression due to the extreme physical discomfort. I once went to emergency room because the GI problems got so bad it caused bleeding in my stomach. This has happened many times since the Neuromuscular symptoms appeared(most likely as a consequence of the Neurological problems going untreated. It created the GI issues which spiraled out of control. Because my stomach & abdominal muscles never work correctly anymore & this leads to horrible GERD symptoms(for which I’m on acid reducers). After that I started have heart issues with regard to my heart rate running too high(for which I have to take Beta-blockers).I have sexual problems that devolped as the Neuropathy progressed(can’t achieve erection,etc).Multiple sclerosis, diabetes, Tumors & just about everything else has been ruled out.So I have my GP & that one Neuro look at me like I’m insane.However Stomach bleeding(verified by rectal exam) & Neurological symptoms(now verified by visable tremor & muscle atrophy) are not psychiatric.It’s a real shame I wasn’t take seriously sooner,huh?