From what I have found it can be connected.

What is Inflammatory Polyneuropathy? Symptoms? How is it dx'd? One doctor I went to mentioned it. Now I'm very curious.

--more often referred to as CIDP (chronic inflammatory demyelinating polyneuropathy) is an autoimmune condition that is often analogized to a slower, less acute onset of Guillain Barre syndrome.

There is an autoimmune attack on the myelin sheathing of the larger sensory and motor nerves, which results in degraded nerve signalling and a host of symptoms. Typically in CIDP the motor symptoms are greater than the sensory ones, though there are variants in which sensory symptoms are paramount. People with CIDP often notice problems with walking or gross motor control initially, and it is easy to confuse the condition with other neuromuscular diseases.

Given that the mechanism is autoimmune, this is a neuropathy condition that can frequently be treated by immune-modulating therapies such as intravenous immunoglobulin (IVIg) or plasmaphoresis. The trick is getting a doctor who suspects the condition, will do the right testing, and who will go to bat for immune modulating therapy if indicated (such therapies are extremely costly and insurance companies are not usually very cooperative).

See:

http://neuromuscular.wustl.edu/antib...mdem.html#cidp

http://www.gbs-cidp.org/home/cidp/cidp/

http://emedicine.medscape.com/article/1172965-overview

Hi Hopeful! It has been awhile. I have been keeping up to date with posts but did not have anything useful to add.

BUT my new rheumatologist did another set of bloodwork and is convinced that Sjogrens is causing all of my issues. My ANA still positive and SSA still high despite results to the contrary at Johns Hopkins. C-3 low as always.

So, I am dumping all the anti depressants and going back to the classic Sjogrens protocol of plaquenil and gabapentin.

Now, he also wants me to add methotextrate to the mix. I declined due to the side effects but am wondering how helpful it might be for others? I am going to start a new thread for this one. Instead he has me on Alleve twice a day - plus I am still on Tramadol. My poor body needs a detox!!!

Going back to the lip biopsy question from Yorkiemom, I agree wholeheartedly with Hopeful and en bloc. It is uncomfortable, and you have to ask the question of whether it will change your treatment. Some say it is the "gold standard," but SOOO many people diagnosed with Sjogrens have a negative lip biopsy and they continue to be on the same medication protocol. There are many uncontrollable variables that can result in a negative biopsy (inadequate sample, inaccurate tissue sample, etc.).

The IVig did not help me (had 6 infusions over a 4 month period), and yes it is expensive, but now that I am not getting it my symptoms are getting worse. It is hard to tell if it is a coincidence! Many people swear it is a miracle worker so if you can swing it it cannot hurt right? You can also try appealing the insurance company decision so that they will cover it if that is the issue...

I have Sjogren's going on 22 years now--no lip biopsy, just all the symptoms (dry everything) and blood markers-SSA of 900 4 1/2 years ago, 366 now, even after daily Plaquenil (200mg, now 300mg).

I just convinced my rheumie to give me Low Dose Naltrexone. Too soon to say if it will help on the bloodwork, but I'm impressed so far. I have Peripheral Neuropathy and fibromylgia, among a lot of other ailments (notably, Lyme disease). Recently, I was in the midst of a major Fibro flare (leg pain through the roof). A couple of hours after taking the first dose of LDN, the pain dissolved..thank goodness! and hasn't reappeared. I'm also noticing that it is handling the PN, but not as well as the dextromethorphan did. (I backed off the DM to 15 mg to see if LDN could handle the PN on its own-it cannot.)

As for the DM, I've been experimenting with it for back pain, which I suspect is Ankylosing. It works fabulously! I was up to 150 mg before the LDN, now I've backed off to 60 with good results (going down to 15mg daily renewed the back pain, so I quickly went back up to 60mg).

What was surprising to discover was that the DM could handle the PN all by itself. I had been taking 50 mg Topamax for it with good results, but once the DM started handling the back pain, I stopped the topamax to see if I still needed it and was pleasantly surprised to discover I did not. I also found that I no longer needed the daily dose of Alleve to handle the tendonitis pain I developed in my achilles tendon and right elbow, or the twice daily Tylenol to handle the other aches and pains. Just DM twice daily (in the form of mucinex DM)--now once daily.

DM is totally experimental, but I find it beneficial. The LDN is also experimental--my rheumie really didn't know anything about it until I gave him an article explaining its benefits--but he was gung ho and I'm pleased so far, especially since the DM definitely does NOT handle full blown Fibro flare pain.

Just wanted to check in and see how you are doing ?

Debi from Georgia

Merry Christmas. I see I have again been remiss in keeping up with posting, something I said I would not do.

The latest thing going on here is that I am scheduled to get a new pacemaker on Christmas Eve. Some Christmas present...

This is a bi-ventricular model with a coating that is supposed to be hypoallergenic made from Parylene. If anyone has heard anything about this, please post. I am dreading it because I am so sensitive to so many materials that normal people don't seem to have problems with.

The main med that helps keep symptoms at bay is daily low dose Prednisone, something I thought would fend off developing osteoporosis by keeping it low.That is not a given, for sure. Last week, I was diagnosed with severe osteoporosis. I am hoping to avoid some of the osteo drugs.

I also had the punch biopsy from Johns Hopkins. Two of the sites biopsied were normal, the third (near the ankle) indicated the presence of a neuropathic process. I might be wrong on the wording, but I am assuming this confirms the diagnosis of small fiber sensory neuropathy.

Last night, we went to dinner and I wore a pair of blue jeans containing Spandex. For a while, I had been able to tolerate it. Not now!!! The pain in the bottoms of my feet traveled to my waist and when we came home, I immediately removed them and the pain began to dissipate slowly. I do not know what to make of this, other than the neurologist who did the punch biopsy said that she had patients who were so sensitive, they could not tolerate their bedsheets touching them. Early on, I shared that problem. This sensitivity seems to wax and wane.

Hope all are doing better.

Merry Christmas or Happy Holidays!

Yorkiemom
Cathie

And yes, if that skin biopsy report indicated there was some sort of neuropathic process going on at one site (which site), that would be consistent with at least some form of small fiber neuropathy. And people with small fiber neuropathy can be extraordinarily sensitive to both actual mechanical touch and "phantom" touch; there is a phenomenon with damaged nerves that are malfunctioning called "delayed summation" in which the nerve fiber fires long after a stimulus is removed, and the sensation seems to build over second to minutes, sometimes intolerably, before eventually dying back down.

Some people become so sensitive with small fiber syndromes that they cannot tolerate clothing, breezes, bathing . . .and/or some have spontaneous burning and other sensations when there are no stimuli at all. Damaged nerves do all sorts of things the brain has difficulty interpreting . . .

Do post here whenever you feel up to it; we do worry about long absences. (I get all sorts of messages when I don't post for a while.)

Jeans are the worst, especially if there is a lot of sitting involved. Although I am old enough to know better I am young enough to be vain and want to wear fashionable "skinny" jeans. The adjective applies to the jeans and certainly not to me, but even in a super soft denim advertised as comfortable I am dying by the time I get a chance to change. I have a couple pair I can tolerate when it really matters to me, otherwise I live in three identical pair of grey Eddie Bauer cotton knit pants. They are soft, don't cling or bag, come in tall, and don't collect dog hair. (We have a German Shepherd who thinks she is a lap dog and a pug.) The pants are hideous and only come in dark grey. If I am going outside for more than a few minutes I wear long underwear and fleece lined pants.

There are several threads on here about clothing for sensitive skin. For me it is my left thigh that reacts to anything touching it. Skirts are better, especially on long car rides if I want to look presentable.

Did you end up doing the IVIGs? I have some kind of autoimmune disorder that is triggered by trauma. Back in 97 I broke my leg and soon after had burning sensations on my skin on upper body and after that weakness. In was diagnosed with bi lateral Bachial Plexitis. Everything returned within a year to normal except for a parylized left diaphragm. Then in 05 I had a major disc herniation which required a fusion. Soon after I developed severe weakness which was diagnosed as CIDP. Was using a walker for 3 mos. They put me on IVIG's every 3 weeks for about 5 months. It did help but it was very gradual. They were $30,000 each back then I was told. At the beginning of one of my treatments the nurse was trying to hang the large glass bottle of IVIG onto the IV tree and she lost her grip. The bottle hit the floor and broke. Very expensive oops. The worst part was when they mix that stuff it has to sit for 1-2hrs before infusion because its frothy. I pretty much spent the whole day there.