Figured one of you would know. I feel as if the inside of my spine is burning. Got to do something the pain is really getting to me again.

Thanks in advance for any info.

Billye

Billye, sorry you are feeling bad again... I know Dahlek and others have a number of sites - here's a couple of them....

http://www.sos.se/Smkh/2006-110-4/2006-110-4.htm
http://www.emedicine.com/neuro/topic467.htm


I think most people show autoimmune markers in spinal fluid, ANA bloodwork, etc... as well as the type of damage that is shown by NCS/EMG - also onset I belive is important....

For my diagnosis - I did not show autoimmune markers but onset was immdiately after a respiratory infection - (onset after an infection or bout with a virus etc is typical), literally waking up one morning with a completely numb hand and foot, and quickly progressed from there with stumbling and falling, weakness, etc, and confirmed by NCS/EMG and sural nerve biopsy that showed demylination and degeneration, axonal and severe nerve fiber loss.....

I'm sure you'll get lots more sites tomorrow - maybe glance at the CIDP forum too?????

Hang in there

Dear Billye,

A high ANA (anti-nucleic antibody) titer is not definitive. My ANA titer is off the charts, but I definitely do not have lupus or CIDP. Most of us get low level general chronic inflammation as we age, probably because of long term exposure to toxins, bacterial and viral exposure, and our lousy Standard American Diet.

If you have CIDP, it's serious but there are medicines, supplement, and diet changes that help. I'd have thought that Mayo would have either diagnosed that or ruled it out.

I'm also sorry you aren't doing well right now. You are in my thoughts and prayers.

Hi Billye:

Alan had a spinal tap, they found protein, they started IVIG, and, over a period of time, it helped his balance. He tolerates it very well, and sometimes, not often, but sometimes, during an infusion, his pain goes away.

His mom had Guillian Barre.

Hope this information helps you. Take care,

Melody

--is that there are many, many inflammatory autoimmune nerve attacks that can be grouped under the CIDP rubric; it may well be that we are talking about several seperate disease processes that all just happen to involve segmental demyelination.

Generally, one gets diagnosed with CIDP if one shows inflammatory segmental demyelination (generally with cellular infiltrates) of motor nerves (though sensory ones can also be involved, a primarily sensory syndrome may mean another related conditon, such as anti-MAG or anti-sulfatide neuropathy), with characteristic NCV/EMG results that include conduction block. There may also be prolonged distal latencies and disrupted combined motor action potentials (CMAP's), all due to problems with myelin.

There are sometimes autoantibodies to be found, but this alone would not "clinch" a CIDP diagnosis. (Interestingly, anti-nuclear antibodies are not characteristic and their presence usually changes the diagnosis.) Similarly, high cerebrospinal fluid protein levels are often found, but this is not specific to CIDP.

One of the main differentials is a relapsing/remitting pattern of symptoms, with evidence of remyelination in between episodes.

Again, the problem is that a lot falls under the "demyelinating immune neuropathy" category. There are CIDP variants, and other clinical entities, such as multifocal motor neuropathy, that are closely related. And, a number of hereditary neuropathies, such as Charcot Marie Tooth x-linked types, have very similar clinical manifestations, but these are often not distinguished unless genetic testing is done.

See:

http://neuromuscular.wustl.edu/antib...imdem.html#mmn

The best site I've found is the following:
http://www.cidpinfo.com/diagnosis/di...005/index.aspx
This whole website is serious and worthwhile reading!

As for your spinal pain? are you sure it's just not due to spinal compression or the many fractures you might have sustained? I ask as I'm not recalling any cases of 'spinal pain' in direct connection w/CIDP. Often folks who have been on steroids for CIDP do develop spinal issues...that doesn't mean it can't happen tho.

I am confused at times, for you, really, that with the effects steriods have had on your overall health and all that NOT one doc has suggested you try IVIG. You certainly qualify to try it with the Sjorgens'.

Trying IVIG seems like a hit-or-miss approach and the success rates for it's use is between 40-60%, but if it works? That is considered a qualifying criteria. Go figger.

I apologize but I'm forgetting the specific antibodies that are tested from blood workups and the spinal fluids.... It's been a while, But they are specific immune anti-bodies relating to IgG [1&2], IgA and IgM.... And tests for these antibodies MUST be conducted to even qualify for IVIG, as a portion of folks are allergic to the IgA or IgM. High ANA#'s usually are indicators to test for the IG anti-bodies.

I do wish I could help more! Gentle 's!!!!!!!!!!!!! - j

Hi Billye

I know you are not a big fan of orthotics or braces, however, I thought I would let you know, that I have been fitted with a new type of brace. It is a German company that makes it. It is a new concept, and they had to stop the clinical trial, as the group that was to give the brace back after wearing it, had gained height, muscle strength, bone density, function and decrease of pain, to such an extent it was deemed unethical to make them go without the brace. There was a 73% increase in back extensor strength, 58% increase in abdominal flexor strength, 11% decrease in angle of kyphosis, 25% decrease in boy sway, 7% increase inital capacity, 38% decrease in average pain, 15% increase in 'well being' and 27% decrease in limitations of daily living. Drop out rate was only 3%.

It is actually designed for osteoporosis, or vertebral fractures, however, in my application it is for my herniated discs in my t-spine, which due to location and my condition are not accessible for surgical repair. I also have the beginnings of degenerative changes in my spine. Since internal fixation is not an option, and so many back surgeries fail anyway, and the one involved in my case is an open chest surgery, this seems like a better alternative.

I can't say how well it works yet, but my old brace helped my spinal pain, it was just so cumbersome I felt like the Michelin man wearing it. This one is lighter and not at all as cumbersome. My other brace also pressed on my old fracture site at my SC joint.

I have a copy of the study unfortunately there is nothing in English on the net. You can PM me if you want more information.

Also, perhaps you can call the doc for some additional pain medication.