View Single Post
Old 12-28-2014, 04:47 AM
ForbiddenDonut ForbiddenDonut is offline
Newly Joined
 
Join Date: Dec 2014
Posts: 4
8 yr Member
ForbiddenDonut ForbiddenDonut is offline
Newly Joined
 
Join Date: Dec 2014
Posts: 4
8 yr Member
Default Young Adult with Post-Viral PN

Hey folks - sorry this is going to be a long read as I really need to vent,

I'm a 22 year old male who basically had his life completely altered the last few months. Last August, I caught a stomach bug from a relative and it ran its normal course in a week. After that, it kept returning and causing a lot of gastrointestinal distress (chills, nausea, stomach pain). My GP ran a stool sample and found h. pylori. I was put on Flagyl and Clarithromycin (I'm allergic to Penicillen), which made me incredibly sick within a day of starting treatment. My symptoms were increased ten-fold from that reaction. I took a medical leave from college.

I was referred to a GI who scoped me (both upper endoscopy and colonoscopy) and found nothing (and, ironically, did biopsies and immunostaining for h pylori, which came back negative).

At this point (start of November), my chills started to become more like burning. I felt it mostly in my bicep and upper-back region. All my bloodwork was coming back normal (and boy was it extensive - ANA, ESR, heavy metals, B12, lyme, EBV (which was positive), mono (which wasn't), hep, HIV, syph).

December 2nd was the breaking point. My burning turned into full-body pain. It was extreme. I went to the ER. I was put on Neurotin with Hydrocodone for break-through pain. Eventually, my GP also put me on Cymbalta. I saw a neurologist and rheumatologist, and we did brain, full spinal MRIs and a spinal tap. The MRIs have no lesions, but I'm waiting on the spinal tap results. I'm expecting them to be normal, though.

So, my life right now is this: I have 4-5 days where symptoms are tolerable (tingling, sensitive skin) and then 1-2 days of intense pain. I use the Hydrocodone to help get me past the attack cycles (and I really do my best to ensure that I take it as conservatively as possible. I've managed to go most this month with 6 pills). The pain mostly appears in my upper-body (upper-arms, neck, back, head), but can sometimes manifest in my lower-body (legs, oddly not feet). I have no weakness or motor loss symptoms - it's purely sensation (for the time being).

Being this young and facing these problems is really difficult. I'm fortunate to have an extremely caring family and girlfriend (soon-to-be-wife). I take several supplements (Benfothiamine 150mg, ALA 600mg, Neurosol, Omega-3 fish oils, B-Complex). I am trying anything to help my nerves heal. I know that there is a possibility that they won't, but I won't stop trying. I also do acupuncture and yoga for stress relief. My eating habits the last few months have been focused entirely on organic fruits, vegetables and proteins (chicken, beans).

The days I feel mostly okay, I work as a coder at home (thank god I taught myself how to code during college). The days I don't, I do anything to distract me from the pain - from warm baths to playing video games.

I just needed to post what I've been through. I know people here have it worse off than I do and have been living with this horrid condition for much longer, but I don't have anyone around me that understands what this is like.

Thank you for reading.
ForbiddenDonut is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
St George 2013 (12-28-2014)