Undiagnosed Neuropathy? Ganglionopathy? MS?

[rfandy]

On November 7th, I was immunized with Rabies Vaccine and Human Rabies Immune Globulin for post exposure (not likely!!) prophylaxis.  Within days, I developed numbness on left shin.  This spread rapidly to groin, calves, feet, face - essentially my entire body surface.  It has been progressing ever since with declining sensory capabilities each day.  I have temperature sensitivity but much loss of pin prik and vibration.  I have also developed bad constipation that I believe is tied into things.  Also experiencing fasciculations and minor balance disturbance with eyes closed (Romberg was OK).  Diagnostic tests have been:  MRI of brain & C-spine w/wo contrast & EMG/NCS.  No sign of lesions on MRI (I do exhibit slight intermittent Lhermitte's Sign).  EMG/NCS was negative for neuropathy.  Neurophysical exam was unremarkable except for pin prik and vibration. Waiting on blood work.  My fear is MS even without signs in MRI (4 weeks ago while experiencing symptoms) or dorsal root problem.  So far, nobody seems to know what's up.  I'm, understandably, very upset as things continue to progress without answers.  I do have an appointment with Cleveland Clinic in eaqrly Feb (If I make it that far!!).   I believe I've triggered MS of the progressive type where lesions are too small to see on MRI?  I hope that's not the case. Any thoughts?

[rfandy]

Doc,  Thanks for your comments.  My MRI's were with and without contrast.  Nothing visible.  I did not get lumbar or thoracic MRI done though I had suggested it to my doc.  They didn't think it worth looking at.  I did suggest a SSEP and that they did agree was a good idea and it was normal. "Uppers and lowers" were done and I do recall foot and wrist being included. I thought my symptoms sounded very much like MS so perhaps what you say is true.  I will share your comments with my Neuro and see what he says.  Waiting on skin biopsy to look at small fiber neuropathy and still planning trip to Cleveland in February.

[LovesHockey]

I have been diagnosed with Fibromyalgia and for the last four years I have experienced Lhermitte's sign. I just had another MRI yesterday (1/22/07) and nothing shows...it only happens at night while I lie in bed. It doesn't matter what position I am laying in but I get this shock like sensation in the back of my head and down my back while hearing a buzzing sound. Does anyone have this problem besides me? I know my problem is not just Fibromyalgia...now the doctor suggests I go back to another Neurologist. These electric shock like symptoms have become more intense in the last six months.

[MortgageLady]

I have been diagnosed with a peneal cyst. I get headaches on and off and feel like the pressure in my head is going to make it explode, pretty frequently. Along with this, my vision gets doubled at times...usually when I have a headache. My legs twitch at night really bad! Every night! So, my doctor decided to put me on Requip for RLS. Not sure if this is where the problem originates...sometimes the pills seem to help and other days it doesn't help at all. My elbows are extremely painful, in the joints and now my hands have the same issue...It feels like my arms are unable to move sometimes, and they are stuck in one position..I force them to move and this is painful. So, if I hold onto something, like a shopping bag, it feels almost like it "locks" my arms, and now my hands are doing the same. It makes them difficult to move too. Some times I am fine while other times it's horrible. (not depression) My doctor has actually done some cranial sacral work which does releave the pressure and headaches for a short time, although not the other issues. I get muscle weakness frequently and joint pain. (I have had MS ruled out.) My lower back, actually has a bump at the base of my spine on the right side that has been an issue on and off for the last 11yrs, since I was pregnant with my daughter. My doctor keeps saying I think you are going to end up out at Mayo one of these days...I can't figure out what is going on with you. He knows it is something though. Along with everything else, I have interstitial cystitis, I don't know if this just happens to stand alone. If anyone has any thoughts or suggestions I would greatly appreciate them!!! Thanks in advance for any guidance you may offer!!! Have a great day!

[Annie62]

You might want to read up on the rabies vaccine triggering CIDP (demyelinating peripheral neuropathy).  I know it's unlikely, but apparently it does happen.  It sounds like you are on the right track in thinking the vaccine might have triggered off an autoimmune response inside your body, just as infections can do.

[CCF-Neuro-M.D.-SH]

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
   The symptoms that you describe suggest a possible post-vaccine myelitis.  The rabies vaccine is known to cause Acute Disseminated Encephalomyelitis (ADEM) in 1 out of every 30,000 cases (rare).  ADEM is a autoimmune reaction against the insulation of the nerves and is like one bad epidose of multiple sclerosis (but generally does not progress as a chronic disease like MS).  ADEM shows up very floridly on MRI and it is unlikely that you have this, but you may have a less severe form of the same type of reaction.  Some lesions in the spine, brainstem, etc are hard to visualize on MRI, but can be appreciated by other methods (SSEP- somatosensory evoked potentials).  I would suggest that you get an MRI of the thoracic and lumbar spine  to complete your imaging and SSEPs measured from the foot (posterior tibial stimulation) and wrist (median stimulation).  If your previous MRIs were not done with GAD contrast and/or were not of good quality they may have to be repeated as well.  The standard treatment for ADEM is steroids (solumedrol) but IVIG/plasmapheresis has been used in refractory cases.  I would focus on getting a diagnosis and then proceeding for there.
I hope this has been helpful.

[rfandy]

Thanks for all your comments.  I appreciate the support.  I checked on the content of the vaccine and it doesn't have any Thimersol.  I've read about vaccines triggering CIDP but I don't have any motor symptoms though I do feel that my muscles have wasted away a bit and they aren't as strong nor have the endurance they once had.  As for MS, I'm told by the Docs I have seen that they don't think I have it though I still have a little doubt.  I go for a SSEP test tomorrow morning to see if that sheds any further light on where the problems might be - peripheral nerves or spinal.  I also consult with another Doc from a bigger/better teaching hospital tomorrow afternoon.  These guys don't seem to be in any hurry and aren't to fired up about going down the vaccine/autoimmune path.  I don't know why.  It's too much of a coincidence.  Why not rule it out if they have doubt.  Anyhow, I need to get to the bottom of this ASAP.  I'm running outta emotional energy!!  I was perfectly fine.  I guess that's everyone's perspective when first saddled with a problem.  I'll post an update when I know more.  Happy New Year.

[JCmcc]

Progressive MS seems unlikely.

[rfandy]

Patsy, I'm convinced it's the vaccine.  It is just too coincidental to be anything else.  Perhaps I should start confering with an Immunologist in addition to my multiple  Neurologists to do a deep dive on the possibilility of a severe autoimmune response triggered by the vaccine.  It seems to me with all the testing capabilities that exist today, they'd be able to isolate a particular autoantibody or multiple autoantibodies that could be targeting my nervous system tissue and then do something about it.  Anyhow, I continue my fight but it's really tough not to get discouraged or lose hope.  Good luck to you as well.

[patsy10]

I wish you the best.  This is horrible to deal with.  They haven't found anything "objective" on me so far.  Vaccines can indeed cause bad reactions.  That's why you have to sign a consent.  My sister got the rabies vaccine (she's a vet) and I believe they told her she could have a bad response.  She didn't.  Also , since rabies is a nervous system disorder as well, it all makes sense.

[Hityty]

Hi guys, I'm not sure if this applies or not, but I have read that vaccines & immunizations may contain Mercury, may be listed as "Thimersol". I don't usually recommend Dr. Mercola's stuff, but he talks a lot about this. You may want to check into this being a possibility??? Run a search on mercola.com for vaccines, mercury, thimersol, etc, there's a lot to read.
I'd also suggest Googling, "Fibromyalgia (FMS), CFS/CFIDS, Lyme disease, Lupus, & other autoimmune possibilities, & heavy metal poisoning.

Also marshallprotocol.com is a treatment for autoimmune diseases, it's a curative therapy, not just a treatment of symptoms. On their main page, Look up "Essential information about the MP" & "Marshal Protocol FAQ's".
Don't give up on finding answers! Its taken me 18 years to find them, (Dx'd with FMS/CFS, hypothyroid, mercury & lead poisoning, but I also have suspected MS or Lupus though tests say otherwise. I understand the anxiety of being told you are fine when you are not fine! But the MP addresses it all, so look into it if you can!)

[patsy10]

Sounds like it could be a reaction to the vaccine.  I know what you are going through.  I've been going through the exact same symptoms for 1.5 years now with no answers.  I've had the MRI's, spinal tap etc....Nothing shows anywhere...all tests normal.  I like you, feel it's progressive MS but I also  saw an MS specialist at Cleveland Clinic who said not likely.  My only diagnosis is fibro but I know it is much more than that.

I wish you the best.