What is a rare sensory form of Guillian Barre Syndrome?

[ginny]

My doctor has suggested that I have a rare sensory form of Guillian Barre.  My problems Commenced following an acute episode of Low back pain neccitating hospitilization. 2 weeks later a throat virus in Sep 2000.Since then I have had cascading tingles down both feet and legs L>R, Weakness in both legs (although clinically test normal) progressing up to thighs and low abdomen.  I started having bladder  problems in Oct with weak flow and mild retention.In December started getting prolonged after images and heightened contrast visually. Also arm parathesias.  Neuro exam normal, Brain and spine cord MRI were normal as are all blood tests and nerve conduction tests. Now have started getting breathless and thumping heart sensation on mild exertion.?a sympathetic effect? Prickling prasthesias now on chin and lips.
I am 43 yo female physiotherapist otherwise very fit and healthy, have managed to very gradually get back to my normal gym workouts 3times a week although I am stll unable to do as much as before.
I appreciate any advice where to look next.

[CCF Neuro[P]-M.D.-RPS]

Dear Ginnie:

I am sorry to hear about your GBS.  I am uncertain what to tell you.  What did the CSF show?  Was there elevated protein in the CSF.  It is difficult for me to believe that your nerve conduction studies were normal, since GBS is a segmental demyelinating disease, although there is a rare axonal form (which should also show nerve conduction defects).  Also, since your antibodies to GM1, GD1a were normal, this would again suggest that what you have is not GBS.  However, there is a sensory neuropathy variant but the sensory potentials are reduced in amplitude or absent.  I think I would try and rule out HIV-1, vitamih B6, paraneoplastic neuropathy, amyloidosis, and toxic neuropathy.  

If you indeed have the sensory variant form of GBS, treatment with steroids or immunosuppressive therapy is variable but since your course is chronic, it might be worth a trial.

Sorry, that I am not much help.

Sincerely,

CCF Neuro MD

[Jan Bailey]

Your clinical course sounds similar to mine.  I had vague parasthesias in groin area, face around lips, etc.  Had shooting pains in legs along with "fireworks"--MRI showed bulging discs in lumbarsacral area.  This improved, but tingling continued intermittantly for 3 years.  Problems passing urine (initiating and maintaining stream), weakness in left leg (intermittant)Normal MRI's, normal spinal tap,etc.  Had increasing exercise intolerance and weakness, first in legs and then progressing to arms.  Muscle biopsy test performed due to abnormal Lactic acid/pruvate ratio and found rare red ragged fiber due to mitochondrial cytopathy.  I too was told at Emory Clinic that I had "guilliane Barre syndrome" but it never showed in EMG's so that wasn't a correct diagnosis.

[ginny]

I appreciate both your comments very much. I will follow up on your leads. My CSF was completely normal. My specialist considers that this neuropathy is affecting mainly the small fibres thus explaining the normal nerve conduction tests. I can almost stick a pin into my skin without feeling pain.  My knee jerk reflexes are brisk.  MRI of lumbar spine shows a small central disc protrusion at L4/5.  Urodynamic studies show that bladder is not neurogenic (thank goodness).

I would appreciate knowing any book or journal article that would help me understand what is happening here. Also happy to talk via email at ***@**** Many thanks.

[BJP]

Hi, I private e-mailed you at the address you listed above with some comments..I wish you the best..Take care  Betty

[wrotty]

I had Guilliane Barre Syndrome in 1988, and for once it did not start in the legs, mine started in the throat............I was told to take three aspirin and go back in a few days if it did not clear up...same day I took a second opinion, and I am glad I did..........that night I was ventilated and in intensive care.  Mine was diagnosed as having the root problem of Microplasma (mycoplasma) Pneumonii........  caused through Amoxycillin being given without swabs being taken. I took over 7 years to fully become functional again...If anyone would like more info, please contact me at    ***@****
Here to help.
Thanks
D G Billings

[Jeffco313]

Have suffered for years with progressing ( then remitting) neurological difficulty. Burning,numbness especially in legs. Now progressed alomost to groin. Painful nerve impingement occur frequently. Headache constant,ear ringing constant. No definitive diagnosis at Mayo or Nih through thirty years.

Monoclonal elevation ( IgM) now appearing in tests, but amyloidosia test negative, multiple lower back and cervical impingements. now calcifications in breast. Anyone with similar history?