For those where CIDP attacked the autonomic system…

Kedasco,

CIDP is by definition a peripheral neuropathy, meaning that it attacks the peripheral nerves. The immune system attacks the myelin sheath that surrounds the nerves outside the CNS.

It really sounds like you are describing something different. Or maybe a variant. A demyelinating polyneuropathy that affects autonomic nerves.

In either event, I sympathize with your situation, It has got to be quite challenging to have system after system shut down.

I do wish you the best of luck in your challenges.

Take care

Actually, the autonomic nerves are a part of the peripheral nervous system, and can be affected by CIDP–I’m another example. My first CIDP symptoms were difficulty swallowing and taking a deep breath. Multiple tests failed to bring a diagnosis (the doctor just shrugged and said it was probably menopause–I was 39 at the time, and menopause was just another word for ‘it’s all in your head’). I started with the tinglies five years later and was finally diagnosed with CIDP in 2001. Thirteen years on, I still have swallowing and breathing problems, as well as a chronic cough, have had additional tests to ensure there’s nothing else going on, and have had my neuro assure me it’s all part and parcel with the CIDP.

At any rate, always test to make sure. Dick’s right: autonomic problems are fairly uncommon in CIDP, and the symptoms could be caused by a lot of other things. I’ve heard of two CIDPers in the past few months whose CIDP masked other problems–one has since died. So, always double check!

Best wishes in the battle,

Deb

Some 7 years ago Gareth Parry wrote in the Summer edition of the GBSFI newsletter about “Guillain-Barré Syndrome and the Autonomic Nervous System.”
It can be found at:[url]http://www.gbs-cidp.org/newsletters/1999summer.htm[/url] It begins –

“The autonomic nervous system controls those functions of our bodies that we do not have to think about, such as heart beat, blood pressure, sweating, bowel and bladder function and sexual function. The weakness in GBS patients, including weakness of breathing muscles, so dominates the clinical picture that abnormalities of autonomic function often go unrecognized or are completely ignored. However, they significantly impact patient comfort during the early evolution of the illness. In addition, with the tremendous improvement in the care of ventilator dependent patients over recent years, abnormalities of cardiac autonomic function have come to constitute a major cause of death from GBS. Furthermore, these deaths are preventable with early recognition and appropriate treatment.”

From his article it seems clear that in GBS patients any dominant clinical picture of weakness of the breathing, and/or other muscles, may lead to abnormalities of autonomic function going unrecognised. They may then be ignored and left untreated. It seems to me that something of a similar situation may also be true for CIDP sufferers. I have been in contact with several people who may have been experiencing such difficulties. I met one yesterday!
Yet if any of these autonomic functions are in disarray the impact on the patient’s comfort is considerable. :rolleyes:

Kedasco,

Good luck in your struggles. I do wish you the best. You have your hands full. My thoughts and prayers are with you.

Dick S

Yes I’ve been fighting the blood pressure regulating sys for three years now. I take Atenol/Noravas/Hydrochlorothy(somthin) and Clonidine depending upon parameters. Its a daily chase to keep it from going to high then to low. It seems as if I touch the BP it tries to evade any routine med control.
I have other functions Bladder/bowell that are on the fritz but they are suspect from maybe MS and age (64).

As my CIDP has progressed, I’ve begun having signs of autonomic involvement. My neurologist has said I have an autonomic neuropathy too. The IVIg is causing improvement in both, thankfully!

So far my autonomic symptoms have included trouble swallowing, trouble getting a deep enough breath, temperature regulation, and not feeling the need to urinate (no “accidents,” just lack of awareness– so I just decided to go every few hours, like on a schedule. When the autonomic neuropathy is flaring up, it also sometimes takes realllllly thinking about it to get a stream started– almost like there is muscle memory, but things are slow… similar to my experience driving, typing, and tying a bow!) When the swallowing is bad, I also get the hiccups frequently (including [U]during[/U] my infusion– not sure what that’s about!) I almost always keep water and some kind of food nearby, for if/when something gets stuck– the water often can’t dislodge it, and I resort to a piece of cracker/fruit/whatever to budge the stuck piece.

The IVIg is helping now, but in the past I’ve also had trouble with sweating. My temperature used to always be below “normal,” it’s now always [I]above [/I]normal (between 100.0 to 101.5– this is not a fever, it’s my “new normal.”) I am unable to tell if/when I am feverish, or even if I’m hot or cold (sometimes I swear it’s both at once– and very uncomfortable, at that!)

I look at it this way– humans organized and named the systems of the body, arbitrarily creating a division between central and peripheral nervous systems. But do our bodies recognize that division in the same way, or is demyleination sometimes just demyleination, regardless of where it occurs? (I picture my demyleination approaching the border, looking both ways and seeing no discernible difference, and asking why the humans thought there was a difference there. Then marching right on across of course, with no regard for our labeling system, haha!)

For what it’s worth, when it felt like I couldn’t get enough air, my SAT rate was actually fine– my body had learned to compensate, even if it sometimes didn’t [I]feel [/I]like things were working properly!

Best of luck to you– this development was one of the scariest yet… but it’s all pretty much under control once again, thank goodness… and I’ve learned yet another chapter-worth in this unasked-for adventure!

And I thought I was the only one… Onset was July 27,2006 following a cardiac stent insertion, diagnosed w/possible GBS o/a 15 Oct and recently,Feb 07, confirmedd CIDP. Originally loss all balance and strength in all extremities, as well as taste and oral sensations, and lack of bowel movements. Went for 45 days without movement before a trip to the OR. Drs still aren’t ready to accept this as part of this disease and treat it indepentdently. Ins co is having a field day. 2 doses of infusion therapy with no luck, but hvy doses of Prednisone seem to be having a small but positive influence. Thanks for helping me vent

I would just like to welcome you to the forum & might I suggest that since you are new, you might want to try posting your own thread. Tell us about your present condition, what treatments you have tried, what has worked, etc. The poeple here all want to help & are wonderful people, but sometimes a post can get buried under someone else’s thread…