I had severe muscle weakness....but mine came in mini steps.
It all began 4+ years ago right after I'd finished a second infusion of Remicade for Crohns disease.
Then shortly after that I had a double bowel resection, my rotted intestines AND an AVM, anuerism like mass that caused severe anemia.
They wondered if I'd caught something from all the blood transfusnions, lost count after 25 I'd received during a 2 year period of time.
But after the surgery...I got much worse with muscle weakness....so bad that I was then totally bedridden! Needed full time care just for basic grooming. I could only sit in the corner shower seat while others soaped me down....then crawel back into bed to have others dry me off.
I needed a walker just to get to the toilet...but wore Depends most of time, I was THAT ill! That was the summer from H3LL!
After the bowel resection my muscle weakness just increased. I had every diagnosis imaginable...from NutCase,Polymyositis,Meneirs, MS to possible ALS....even sent to ALS center here on Pill Hill...what a nightmare that was!
I wanted to die....even to the point I made an attempt...too fatigued to pull the trigger! ...I gave up, went back to bed!
With increasing weakness, other symptoms began appearing such as burning lips and total loss of my balance. I had to hang onto walls just to keep from falling my balance was that off. I drueled mostly too fatigued to swallow! Then the burning began in my hands and feet....EMG and NC test showed classic sock glove pattern moderate levels of PN....was scheduled for more muscle studies and muscle biopsies....I was too fatigued to even allow anyone to drag me to those appointments....I'd cry and cancel all of this!
No one can even begin to understand this kind of fatigue!
And I was sick of the dimissive roll eye's received by Neuro's when I'd ask if my burning lips could be some sort of vit or min def....well duh people!
Didn't they know that anyone with long standing bouts of D-rea causes mal absorbtion! And 2+ years of deadly low anemia played a part in this as well, and Remicade AND surgery strips your body of vitamins and minerals!
No S Sherlock! But the PN burn, fatigue and now spinal cord pain whenever I put my chin to chest....felt like shock wave and burn down my spine...doc said...well...just dont do this! Well duh! Too many stupid "Sherlocks" each pointing in other directions.
One day my DH gave me a laptop...at least I could muddle thru a few web sites searching the cause of PN as I'm non diabetic....I wanted to know "WHY"!....then I found a web site where Rose talked about Methyl B12, simple vitamin deficiancy may be the cause of what was going on with me.
Could it be? So glad I took her advice...within 10 days I miraculously got out of bed and did a load of laundery when my care giver came over! OMG! After half a year of 100% bedridden and taking just a few tablets under my tongue, OK...it was more than just a few! It can't hurt you...so I was eating them like candy after my husband had purchased a few bottles for me that Labor Day weekend.
I hug Rose every day of my new life! That's what was wrong! B12 deficiancy, big time even thou was told it was normal level...232 is normal level? Yeah doc....and wearing a white coat makes you smart! NOT!
My walker sits in the garage collecting cobwebs now and although I'm not totally cured/well....at least I'm on the road to wellness and no longer suffering horrible fatigue, and PN is almost 90% gone....EMG back to normal!
Could it be?......YOU BET! I have zero doubts! Not one single shred!
Blessings, cheryl