Pn/gbs
 

I was diagnosed with idiopathic sensory neuropathy in 2002. It has never went into remission and i still take several medications for pain. In 2005 and 2006 i had gbs and had to learn to walk again two times. Now my pn covers my arms, hands, legs , feet. Recently my pain has increased to the point were i can hardly rise from a chair. My question is has anyone else had both conditions? By the way i am only 37. What is the average age for someone to come down with pn?

PN sufferers are of all ages, although the majority seem to be
in the over 50-55 range.
The age of 37 is a bit young to have PN, but it is not uncommon.

I am 24 and had GBS last August--I got PN in December and have been bedridden since May--so I am even younger than you are... medical conditions don't discriminate by age, unfortunately.

It IS a wearing issue? But, learning to walk all over again?
 

Is something common for chronic GBS or CIDP folks. I've got CIDP and only got my first and pretty bad 'set-back/relapse' last year. It was a whopper tho.
Mine seems to be mostly sensory, but some muscular as well. I hate that muscular aspect? But it got me to be qualified for IVIG which has helped immensely.
PN and GBS and CIDP are all very 'indiscrimanate' when it comes to ages? It gets older, middle-age, teens and kids....depending on the sub-types of the diagnosis.
I've got to ask? Where are you at mobility wise, and functionally? Not to mention pain-wise? Are numbnesses/weaknesses progressing? These are key things to articulate to a doc who mite be trying to diagnose you or treat you. Descriptions? Short and sweet! Numb more up to 'here', weak more to 'here', swallowing 'harder'...get my drift? Pain? Difficult one but the one I've used is like living under a 'High-tension-power wire tower'! There's always a 'humm'... Yes? No? Maybe, Sometimes? Only you can tell and describe.
Once you post 5 times? you can PM any of us w/questions? But it's really better for you to put it out to this great group of folks and that their collective minds can give YOU info to help you get diagnosed.
I don't think anyone here WANTS PN? But we do care enuf to help you and others! Why should we all have to constantly reinvent wheels?
Hugs :hug::hug::hug:'s - j

I am a Lyme survivor. I did not get traditional GBS, but I went thru a period of horrible neuro things going on and was told it was Fibro....it took 10 years after my Lyme diagnosis to be diagnosed with PN, and I also get IVIG.

Now my ANA is highly positive, not due to the IVIG, since it is + for years past the half life, so, I am stuck with some immune junk.

I wonder, have they considered IVIG for you?? It would be worth a try. IT is a FIGHT, with docs and insurance, but in your case, so young, you are a good candidate for it, if there are no other contraindications.

Ivig
 

I've had many rounds of ivig and after a while they just stopped doing anything for me. We then went to cellcept but i had an allergic reaction to that. My neuro who is one of the top at emory university sent me back to my primary care doc for treatments that he said he could handle. He did advise me to come back to him if i became parylysed. So my primary doc writes all my scripts. My primary complaints now are all pain related. I'm lucky that my doc will experiment and write for those meds. It's not a perfect situation but i trust my doc and he has seen me through some hard times and knows when he can't handle a problem.