MS? Guillain-Barre? Cancer? The Band?

I don't even know where to start. 2011 was a crazy year for me! It started out having problems with my band. I got EVERYTHING emptied from my band the first part of January. I gained 14 pounds...lost a few gained some more. Got fills and unfills and never found the sweet spot all year! Major frustration!!

THEN in September I had the first of several "episodes" of neurological attack. It started--weirdly enough--in my left ear. I thought I had a hideous suddenly very acute inner ear infection. I was dizzy and in crazy pain. The PCP asked if I'd been swimming...said everything looked perfect, gave me ear drops and told me to let her know if it doesn't clear up in 3-4 days. The next day things had gotten alot worse. My lymph nodes swelled up like hard olives on the left side of my face/neck/behind my ear. I got electric shooting pain in my jaw--worst pain I've ever had, and the left side of my tongue started going numb. She referred me to an Ear, Nose & Throat DR, and he said he had no idea what was going on, but suspected Ramsay-Hunt Syndrome (Shingles in your Trigeminal nerve). He dosed me up with Doxycycline (in case it was Lymes Disease) and Valtrex (in case it was shingles).  Over the next week, my whole left side of my face was paralyzed (Bell's Palsy), half of my throat was paralyzed (couldn't swallow easily) and my little fingers were numb in both hands.

They took what felt like a gallon of blood for tests of ALL kinds, did CT's, MRI's, Neurological nerve testing, and a Lumbar Puncture (spinal tap) and a blood patch to fix the problems the LP caused! They gave me LOADS of Prednisone--I gained 12 pounds in ONE week!!!!! But eventually everything cleared up in about a month.

I saw neurologists, immunologists, ent's...etc. They think I had shingles in the trigeminal nerve. The shingles triggered a autoimmune attack on my nerves called "Guillian-Barre' " and it all went away so not to worry. They found a "spot" on my brain that they want to keep a close eye on and have another MRI in April--but it wouldn't have caused any of these problems. They also found out that I have some immune deficiencies. I don't know how I can be autoimmune and immunodeficient at the same time, but apparently it happens.

All was going along fine until December 20th...I had horrible aches in my shoulders--as if I had done P90X. I didn't have any strength in my arms. I mean like--couldn't blowdry my hair...couldn't WASH my hair...couldn't hold on to a Valet ticket because my thumb couldn't squeeze my index finger enough. I broke a glass pitcher, 2 glasses and a bowl just by getting them out of the cabinet and dropping them. I couldn't carry a plate of food to the table. Had a hard time driving, typing, existing.

That's when the mental stuff started. I was fine with the first attack. I was able to regain all the sensation and functionality of everything.  I had a diagnosis that I could point to...it was a one-time anomoly.  But the second attack rocked my world. Suddenly, this could be chronic. This could be degenerative, debilitating...my whole life could change. My PCP told me to start getting my head wrapped around the idea of having MS or CIDP. I just couldn't. I didn't feel like I had the capacity to do that. I was deeply depressed and cried every time my daughter wasn't around. The soonest I can get back in to see my neurologist is Jan 20th...so I don't know what he'll say.

By Christmas I had all my feeling and strength back just as quickly as it came, it went. I felt WONDERFUL!! I got some fight back and felt like I could mentally grasp the chronic disease diagnosis if it came. I would just carpe' diem the good times when I felt good--exercise, etc--and whenever I have an episode I just retreat, get rest and get thru it. 

I had been noticing it hurt to shave my left underarm. My lymph nodes were getting swollen again--this time around my breast. And my left breast just throbbed when I took off my bra--like I was pregnant--but only one side.  January 3rd, I was in the shower and looked down and saw a patch of redness, about 2 inches by 3 inches...it looked like a million tiny capilaries all dark--like a drunkard's nose. I googled that--and it scared the crap out of me! Everything I read said that if I wasn't a nursing mom that Inflammatory Breast Cancer was suspect and should be ruled out. After reading about IBC and it's agressiveness and poor prognosis--suddenly a chronic autoimmune degenerating disease would be ok. At least you have time for it to be considered 'chronic'--as in years left.

The redness left in about three days and hasn't come back. Some of the swelling and pain is gone. My lymph nodes are still big and achey. I went to see my PCP and she said that it wasn't Breast Cancer because 1) there is pain (cancer has no pain)... 2) the redness wouldn't come and go...and 3) my skin would have an orange peel texture. She suspects MRSA infection in my breast or some other bacterial infection. She took a CBC and a MRSA test up my nose. They called...my CBC is normal...havn't got results from MRSA yet.  I saw a House episode where a patient was having neurological problems and it ended up being cancer somewhere else in the body. Your immune system tries to fight the cancer and ends up turning on the nerves instead.  That freaked me out.  I am trying to decide whether I should get a second opinion or not.

I'm fighting internally with what is being hypochondriac and what is being "watch out for yourself because doctors miss stuff". I don't want to be a hypochondriac. I don't want to be an annoying patient that reads the internet too much. I'm not a doctor.

Anyway.....a nagging question in the back of my mind has been whether having the band makes people more prone to auto-immune issues.  Is having a foreign substance in the body making my immune system freak out? I asked the Immunologist, and he didn't think so.



So, all of this has prompted me to do alot of research into nutrition (specifically that supports the immune system, reduces inflammation, complements the band restrictions--etc). I want 2012 to be a year that I reengineer my nutrition to give me the best shot at combating whatever it is that I have.

I know that nutrition isn't everything, but it is something that I can control--and I need something like that right now. I'm hoping I find the ever elusive sweet spot again some time this year. I'm glad I'm not pregnant.

I thought about starting a new blog for the nutrition overhaul, but I've decided to keep everything in one place. I'll be rolling it out soon.