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Avatar universal

Calling DR. HOUSE - please diagnose me!

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.
6 Responses
1756321 tn?1547098925
The most common cause of elevated cholesterol is a poor diet (cholesterol rises to protect the body from harm). The second most common cause is hypothyroidism. My cholesterol started to rise and my liver enzymes were raised for years due to undiagnosed Hashimoto's thyroiditis.

Oligoclonal bands are also called gamma restriction bands.

ClinNavigator - Oligoclonal Bands in CSF...

"1 Polyclonal pattern (no discrete bands) in both serum & CSF:

Rare Multiple sclerosis
Myelitis
CNS vasculitis
Paraneoplastic syndromes
Systemic lupus erythematosis

2 Same number of OCB in serum & CSF:

Myelitis
CNS vasculitits
Paraneoplastic syndromes
Lupus
CNS infections
Neoplastic meningitis
Behcet Disease
Rasmussen Disease
Hashimoto encephalitis
Lymphoproliferative disorders
Hepatitis C

3 OCB in both serum & CSF; CSF has at least 2 more bands than serum

Multiple sclerosis
Most CNS infections

4 More than 2 OCB in CSF & polyclonal pattern in serum

Most Multiple sclerosis

5 Monoclonal band in both serum & CSF

Normal individuals
Multiple sclerosis
CNS lymphoma
CNS inflammatory disorders

Patterns 3 and 4 are reported as positive for OCB. Although a single band difference between CSF and serum is not diagnostic of multiple sclerosis, more than one half of these patients will progress to a full oligoclonal pattern."
Avatar universal
So based on the way this is written-

"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. "

What type would you say I am?
1756321 tn?1547098925
2 Same number of OCB in serum & CSF:

Myelitis
CNS vasculitits
Paraneoplastic syndromes
Lupus
CNS infections
Neoplastic meningitis
Behcet Disease
Rasmussen Disease
Hashimoto encephalitis
Lymphoproliferative disorders
Hepatitis C
Avatar universal
and it doesn't matter that they are more prominent in the csf?
1756321 tn?1547098925
I'm not too sure about the prominent CSF. I did find an answer on the thread below that lists almost identical lab findings but with 4 bands.

"The CSF contains 4 well defined gamma bands that are also present in the corresponding serum, but some bands in the CSF are more prominent.  This pattern is associated with Guillain-Barre's syndrome, peripheral neuropathy or increased permeability of the blood-brain barrier secondary to infection or trauma."

http://www.medhelp.org/posts/Multiple-Sclerosis/Oligoclonal-Bands---What-are-they/show/1468270
Avatar universal
Thanks, yea I saw that. It just seems if the csf is more prominent than the serum, it would have to come from the csf since it cant cross the barrier the other way. I'm stumped. I have researched the web and just can't find an answer with regard to that. But aside from that, I would just like a diagnosis on what I have knowing the results of all the other tests too, to which I can now add that my kidneys have now been affected. My liver enzymes are very high too. I can't win.

eGFR - 32
Creatinine - 1.8
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1756321 tn?1547098925
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