Symptoms (4 Years):
Numbness/Cramps/Fasciculation (shins and arms)/Pain everywhere- random and can be anywhere,anytime(worse at night)
feet and hands especially very numb
Cramps in calves and feet all the time
Severe Fatigue
Clumsier, can't grasp well or open things. Always bump into things now
Eye Twitches, twitches everywhere
Weak Arms and legs
Trouble going up steps-exhausting
Feel like I weigh 1000 lbs.- very heavy feeling
Lying down- arms and legs feel heavy
Feel vibrations inside me
All these symptoms come and go (never totally gone) and vary in severity. Sometimes VERY bad.
Only thing I always have is very numb hands and arms (from elbow down) and numb toes, especially 2nd toes
Tests -
Blood now: (had higher #'s in past but these are always high last 5 years)
ESR 41 (H) mm/hr 0-20
ALT 70 (H) U/L 9-52
AST 47 (H) U/L 14-36
CRP 14 (H) mg/L <10
EMG: Periphreal Neuropathy - Axonal damage
MRI (low strength used because of newer stents. Was checking for stroke from an incident where I lost balance,
fell to ground profusely vomiting, couldn't speak, couldn't move, became unconscious, taken by ambulance to hospital from bar (I was NOT drunk),
and they did MRI after they saw from the blood test that I wasn't drunk (at first they thought I was passed out totally intoxicated)
Results: No Stroke. When looked at a year later for lesions for MS, Dr said there were none (however with my research that might not be accurate.
MRI strength may not have picked up small new lesions. But I don't think it is MS anyway) No lesions or protein in Spinal Tap
Spinal Tap:
The patient's CSF contains 3 well defined gamma
restriction bands that are also present in the
patient's corresponding serum sample, but some bands
in the CSF are more prominent. (GBS)
("but some bands in the CSF are more prominent." I'd really like to find out what significance this has.)
Sural Nerve Biopsy:
Moderate Axonal Nerve damage (small fiber)
Was put on Steroids - worked GREAT. Most symptoms went away except some hand numbness.
Doctors don't have a diagnosis for me. Want me to go to an Academic Center specializing in Autoimmune
Weened off Prednisone to start IVIG Therapy. When I hit 20 mg Prednisone symptoms started coming back
Insurance approved IVIG but when I had Stress test for heart (IVIG thickens blood and I have CAD, it was abnormal
and being cathed in a couple of days (might need bypass, So IVIG will have to wait.)
Supposedly ruled out : Lupus, Lyme, MS, CIDP, GBS
History:
Hyperlipidemia
Gout
GERD
Chronic Diarrhea
Not Obese
Low Blood Pressure
Never Smoked
Not a drinker
Not Diabetic
Heart:
CAD - 9 blockages 5-Open 4-Stented
PVC's very bad feeling them - Holter showed 3000 a day
Bradycardia - usually 40-50 bpm
Blood Pressure drops too low when I stand - almost pass out
average normal pressure is 90-100/50-60
Lungs:
Always very short of breath yet PFT showed normal
Get weird thing where when I feel PVC's my chest tightens and feel tightening in
esophagus. Makes me cough and my voice changes.