DX-Ployneuritis of Unknown etiology?

Well, Um Numbess, burning pain,freezing pain,pin & needles/tingling, Muscle weakness, Muscle loss, tremors, popping & cracking noises coming from Joints(due to the lack of muscle fluidity), fasciculations, back-pain,neck pain, left side of face going numb, Acid reflux symptoms, temporary paralysis, constant falling,lights flashing in vision. (MS, Epilepsy,Diabetes, thyroid, & just about every other condition I can think of has been ruled out. ) doctors kept saying Anxiety until very recently when a trip to the ER got me a Neuropathy Dx. My PCP & his associates said Anxiety or you might have disease not yet discover by medicine until 2 days ago when I said look,I understand I have a history of psychiatric issues but this is not psychiatric. I was dx with Peripheral Neuropathy at the ER.Finally my PCP gave me a script the read:DX Ploy-neuritis of unknown etiology & he also gave an order for the (EMG/NCV) testing on all 4 extremities. Thanks so much for listening Emily’s mom.

Almost 2 years now Kelly! It started about 1-3 weeks after my most recent bout with the flu.I have always been very quick to catch colds & flus, have swollen lymph nodes & get random infections. It started with minor muscle twitches & progressed from there. I’m now on Neurontin & Ativan for Neurological symptoms, Propranolol for heart rate issues & tremor & prilosec & zantac for GI issues. I been tested from here to the moon & finally had a heavy metal toxicology blood test(doctor said it would most likely come back normal & handed me a script reading: (EMG/NCV) exams on all 4 extremities

DX-Ployneuritis of unknown etiology.

My Neuro exam is for Oct 17th.

The Blood test for toxic chemicals has already been done(waiting for results but doc says it’ll come back normal). Had an MRI of the Brain that was totally clean except for evidence of sinusitis. Doctor said he wouldn’t order one of the spinal cord or brain again. I’ve had thousands of dollars in tests & the anxiety dx no longer explains these symptoms even though I actually have anxiety now.lol He finally started looking at my immune system(again) when I insisted he give me as many drugs as he could to treat Multiple sclerosis symptoms(Not DMD medications). At that point he asked me what symptoms are you having that we haven’t already treated.I couldn’t think of any. Just after I fell in his office & one of his nurses went scream in shock that I had,My mother came to the office to pick me up,he ran out to see me on the floor I got up &  the nurse handed me the script. He looked at my mom & told her(We don’t know what’s wrong with him).

When I read what his diagnosis was on the script. I instantly knew I had been diagnosed with something serious.I had been reading up & when I got home I entered his exact words into the Google search engine on my computer:  DX-Ployneuritis of Unknown etiology? Which is:
Guillain-Barré syndrome
Listen

an acute neurological disorder of unknown cause, involving partial paralysis of several muscle groups and occurring rarely after certain viral infections and vaccinations.

I know it is but that’s when they penciled me in. That’s why I think it might be CIDP or something else because of the amount of time that’s elapsed.

I saw a Neuromuscular specialist who didn’t take it seriously just wanted to bill my insurance.She didn’t do any tests wanted 6 months to see if the muscle loss got worse it has already.  PCP kept saying anxiety for over a year. Went to the hospital diagnosed Neuropathy a month ago. Finally about 2 days ago my PCP diagnosed me with Ploy-neuritis of unknown  etiology. I’ve loss a tremendous amount of muscle & I’m tired all of the time. This all started after a bad bout with the flu in April of 2011.

Are you by any chance a doc or Neuro? Because if so I could use your help.

I actually misspelled it he spelled it right. I just checked the scripted.

I’ve have so many symptoms & don’t really have a name for it. Numbness, burning pain,freezing pain,pin & needles/tingling, Muscle weakness, Muscle loss, tremors, popping & cracking noises coming from Joints(due to the lack of muscle fluidity), fasciculations, back-pain,neck pain, left side of face going numb, Acid reflux symptoms, temporary paralysis, constant falling,lights flashing in vision

Thanks for your advice. It’s very helpful in my quest to find answers.

I just started Prednisone If it works then I know what the Dx is & it’s working.

I saw another primary. Gave him my symptoms &  evidence on paper of previous Neuropathy diagnoses & was diagnosed with Neuropathy for 3rd time in a month. The prednisone 20 mg x2 daily is a 7 day course & guess what it’s working.I’m running(slight distances again) instead of using a cane , Doing housework, & not losing my balance easily anymore & this is after just 2 days also the dizziness I usually get upon standing is gone . I believe that polyneuritis of unknown etiology is now an autoimmune polyneuropathy(most likely CIDP given my rapid response to the prednisone  & history of symptoms).

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?

Not yet however I’m suppose to finally have those done on oct 17 th (EMG/NCV) at a neurologist.

Finally had the EMG & it confirms large & Small fiber axonal  sensory peripheral Polyneuropathy as well as carpal tunnel syndrome with demyelination. The Neuro & I both think postinfectious/Autoimmune as a primary cause.