So sorry to hear about the progression. Wishing you the best in your next steps toward finding relief. Please keep us informed as you ponder your options.

I have often said that one of the problems with all these neurological symptoms is that any symptom that can be produced by spinal issues can be exactly matched by those caused by more peripheral, systemic issues, so that's it's difficult sometimes to tease out exactly what is causing what (though in the case of spinal causes the symptoms are more regional--sometimes; it would be hard to know what was involved if someone just had foot symptoms, for example, without some pretty extensive testing).

We know in my case I have this whole acute onset small-fiber history, and I do have spinal issues superimposed on that. Makes me quite the complex patient. And, as I say "nobody is excused from being co-morbid".

According to my quicky research (accomplished during this post, LOL), Dr. Harrison is a physiatrist at Cornell, and might well be worth consulting--I do like physiatrists generally, as they usually come from a multisystem, interdisciplinary approach. So thanks for that, SylvieM--definitely worth a call.

Thanks to your post I just learned the doctor I had referred to in my post is a Physiatrist. When you described the reason you generally like them I realized the description fit my doctor. I got online and sure enough he is a Physiatrist. I've been seeing him for years and never knew. Thank you Glenntaj! You teach me so much.

Thanks glenntaj for sharing your experience - I'm about to go for an MRI tomorrow for left shoulder and cervical spine - so reading a first hand account was useful. I wish you all the best for finding the right treatment.

Physiatrist - I had to google that one - not a term I'm familiar with but it's exactly what it sounds like: "a medical doctor who specializes in physical medicine, rehabilitation, and pain medicine. These spine specialists focus on the body's musculoskeletal system, which includes bones, joints, muscles, ligaments, tendons, and nerves.".

So I then searched "physiatrist NZ" to see if I could find any in my country - the only thing that came back was "psychiatrist". I guess we have more mental health problems here than we do physical ones - clearly not a specialty deemed important here - or maybe it has a different name? Does anyone know?

When I googled Physiatrist auto correct changed it to psychiatrist. On the American Academy of Physical Medicine & Rehabilitation website I found this, "Physical Medicine and Rehabilitation (PM&R) physicians, also known as physiatrists.... treat a wide variety of medical conditions affecting the brain, spinal cord, nerves, bones, joints, ligaments, muscles, and tendons."

I too have severe deterioration of my cervical spine, which was first found 28 years ago and has steadily worsened.

My neurologist has conducted Electrical conduction and muscle tests of my arms and hands. He found a 'non responsive' area in my cervical spine, but no nerve damage in my arms and hands. This was two years ago.

If or when there were nerve damage in my arms or hands I would consider surgery, otherwise I rely on Aleve, Gabapentin and prednisone to reduce inflammation and nerve pain.

I have small fiber neuropathy in my face, lips and tongue which at first my Neurologist thought might be caused by nerve compression in my cervical spine. But it isn't.

Trial and error and false leads to dead ends are frustrating. But this is part of having chronic conditions and complex conditions.

Our support groups are life lines for us.

Hugs, ElaineD

According to my quicky research (accomplished during this post, LOL), Dr. Harrison is a physiatrist at Cornell, and might well be worth consulting--I do like physiatrists generally, as they usually come from a multisystem, interdisciplinary approach. So thanks for that, SylvieM--definitely worth a call.[/QUOTE]

Hey Glenn,

Just returning the favor (Glenn referred me to my latest neurologist). Harrison is also a dynamite acupuncturist, studied it at UCLA.

--as well as a couple of surgeons at Cornell and one at NYU that had been recommended to me by a choir-mate of my wife's (who has had two good cervical operations done by the guy).

Of course, they all want records and images sent--but that's easier nowadays with electronic media; I just have to get a copy of the images for the NYU doctor.

Regarding the Lyme disease possibility--I did go through the ELISA, Western Blot, and eventually Igenex testing back in 2003 and nothing suspicious for Lyme or other tick borne diseases ever showed. Of course, we do suspect in a molecular mimicry autoimmune process that there was an infectious prodrome, but it could have been anything from a bacterium to a common virus--the key, presumably, is that it would have to have a chemical composition and shape similar to that of my small fiber nerves to result in my immune system to continue to attack.