Wow! Thanks for your replies! This information is so fascinating that I'm glad I asked.

I've probably had neuropathy for 10 years now, but I've also had fibromyalgia the same length of time, so whenever I would complain to a doctor about numbness/tingling/weird sensations, it would be dismissed as my fibromyalgia without any investigation. It wasn't until 2004, when I had an episode of going completely numb from the elbows down and from the knees down that a neurologist took me seriously and did an EMG. It was positive, but the neurologist was reluctant to connect it to an autoimmune cause even though I had been diagnosed with Sjogren's the year before.

I believe the primary cause is the Sjogren's, with the fibromyalgia exaggerating the pain signals even more. And you're right about Sjogren's causing nerve pain throughout the body: there are times when I feel as though I've been hit by lightning, it's that sudden, and I involuntarily yell and freak out whomever might be nearby. The most common scenario, though, is a very ragged pain in my right big toe, like someone is trying to take the top off my toe with a can opener.

I am debating now whether I should ask my primary care doctor to refer me to the Mayo Clinic. I am pretty confident that all my diagnoses are correct, but the problem is, they were made in Denver, and I have moved to Sioux Falls since then. I've been to three rheumatologists here, and none of them had heard of my Denver doctors, and none them believed I had Sjogren's (they had never heard of sero-negative Sjogren's), and they all told me I couldn't possibly be disabled.

So I'm at a standstill as far as a rheumatologist closer than Denver that will treat me. I really don't want to do all those tests over again, but if I don't have ongoing supporting documentation from a specialist, I will lose my disability benefits. My medical insurance won't cover something like this either: how on earth does a person on disability pay for a trip to the Mayo Clinic?

I would go straight to a neurologist, but I think it would help if I already had a rheumatologist lined up for them to work with. That way I might avoid the "it's only fibromyalgia" runaround I get so frequently.

Any opinions?

fanfaire

Do you actually HAVE copies of those Denver doctors' reports? Maybe adding a 'hospital bio' page of them will add to credibility.. I know new docs never trust/believe other docs' work....that's gotta be a given. But sometimes, that the prior docs either had better training or backgrounds can work one of two ways...ADD to your situational credibility or make your current docs jealous.
I've had two docs from competing hospitals [both neuro heads] and the second wanted sooo badly to POO POO the first neuro heads opinions...except for ME and for the fact that it's my local neuro who concurred with neuro head #1 and ME....I'd been referred to neuro head #2 by a 'mentoree' of his --a neuro who'd left my regular local neuros' practice...Got the politics of it all? It gets far more squirrelley than it should be or has to be!

Web up this site and see where you mite go that's 'easier?' to get to...and go from there: http://health.usnews.com/sections/he...est-hospitals/

Then check with the Neuropathy Assn., Sjogrens' Assn...and other places-GBSFI and such and take a look at their boards of directors, medical advisory boards and such...there HAS to be someone w/a near affinity to or training for what you have not too too far away! And, of course, ASK your Denver docs! Do NOT leave any stone unturned. I have faith that you will find that special doc you need...one to treat you. But, don't forget that on the way...when you turn those rocks- you can find all sorts of bugs under them!

Hope this helps! - j

You might also check with the board of www.sjogrensworld.com too. They have a thread that is entitled Recommended doctors. And a lot of the members have been diagnosed with sero-negative Sjogren's. I myself am sero-negative.

Billye

Thanks for the suggestions and links. Believe it or not, according to the US News link, the closest recommended hospital for both neurology and rheumatology to where I live IS the Mayo Clinic. On the Neurology Association site, there is no one listed for South Dakota, Nebraska or Iowa, and the only one for Minnesota is in Minneapolis, which is further away than Rochester, where the Mayo Clinic is.

There is no support group for Sjogren's in Sioux Falls, no South Dakota doctors listed with the Sjogren's Foundation, and when I inquired about rheumatologists with Sjogren's World awhile back, no one knew of any near me.

Each time I went to a rheumatologist in Sioux Falls, I gave them all my rheumatological medical records so they could be reviewed prior to my appointment. One of my docs in Denver was Stuart Kassan, who does international research and has edited and contributed chapters to The Sjogren's Syndrome Handbook and is a celebrity amongst Colorado Sjogren's patients. He went so far as to write to one of the Sioux Falls rheumys to explain sero-negative Sjogren's, but it seemed to make no impression.

I suspect there may be some professional jealousy going on here. All three rheumatologists I saw in Sioux Falls were very arrogant when they found out someone else had diagnosed me. One of them snarled at me, "So what makes you think you have Sjogren's?" and I had to tell her she was holding the lip biopsy report in her hand!

I asked the Denver rheumatologist I saw most recently if he could refer me to someone in South Dakota, Iowa, Nebraska or Minnesota. He didn't have any ideas as he's from back east and all his professional connections are either on the east coast or in Colorado. Maybe I should write another letter to Dr. Kassan and see who he knows.

I'm hesitant about going back to my primary care doc as she is the one who referred me to the first two rheumatologists I went to here. There are only two rheumatology offices in Sioux Falls, so the choices are slim to begin with. And there seem to be a lot of "bugs" here.

But I know I can't put this off forever. Especially with the recent increase in neuropathy symptoms. In the past, there have been occasions where this has lead to stroke-like episodes, and I don't want my first intro to a new doc to be taking place during one of those if I can help it.

I know this has gotten ridiculously long, but I forgot to ask before: where in the spine is C6/C7? Just for future reference.

Thanks for your help!

fanfaire

--the nerve roots are numbered above the coreesponding verterbrae, so the nerve root that is labelled C5 is beween the C4/C5 vertebrae, the C6 between the C5/C6 bones, the C7 between the C6/C7 bones.

Each nerve root has a specific "dermatome" that it contributes fibers to and that corresponds to a certain region of the body, though there are some individual variations.

Take a look at:

http://www.geriatricsandaging.ca/ga_...atome_fig2.gif

http://images.search.yahoo.com/searc...079ee&ei=UTF-8

http://www.pitt.edu/~regional/Inters.../Dermatome.jpg

I suspect there may be some professional jealousy going on here. All three rheumatologists I saw in Sioux Falls were very arrogant when they found out someone else had diagnosed me. One of them snarled at me, "So what makes you think you have Sjogren's?" and I had to tell her she was holding the lip biopsy report in her hand!


Heh heh heh... I would pay to have seen that...

Cathie

My worse area of pn is in my legs and feet but I do have these light touch sensations in my hands, arms and lately down my back. Usually I tend to start rubbing first trying to remove whatever or twist around to look at the back of my legs. Then it dawns - pn on the move again! The last couple of days I have had not even a full tingle but a small sensation that has been running up and down my back. From past experience I know what it is - the little whispers of pn letting me know it has decided to roam about to another area. Although weird, if I could I have only these sensations, pn and I would be a lot better roommates!

Hello all, I have been seeing a neurologist and had a nerve conduction, and I have small nerve neuropathy. Symptoms include burning in head, arms, legs especially and also I have numbness that travels around. I also have spondylothesis in my neck and bulging disc in lumbar. Just started Yoga and hoping it helps. I have IGM MGUS which may be attacking my myelin sheath on nerves. Had MRA on "Circle of Willis" and waiting for results. These are veins & arteries that lead up the back of the neck I think.
I sure sympathsize with all and can certainly relate to the discomfort.
I am new here and just wanted to say hello once again. MollyB

I just recently started having a similar sensation on my nose of all places! It feels as if there is a loose hair kind of tickling my nose. It's very aggravating but not painful. I also have the stocking/glove sensation which, for me is like an extremely tight boot/glove. Sometimes I even reach down to take off my shoes only to discover I'm barefoot!

I've had that too! I kept swiping at my nose today in aquacise class until I realized there might not be something on it after all. I didn't even connect it with the other stuff until just now.

Like it says in "Alice in Wonderland", curiouser and curiouser.

fanfaire