For those where CIDP attacked the autonomic system…
AnonymousNovember 29, 2006 at 1:20 pm
Besides the usual seral and motor nerves being affected, I also have the CIDP attacking my autonomic system, (this was confirmed by skin biopsy about a year ago). It has been attacking the nerves that control various organs, as well as the nerves that control my diaphragm and stomach. But it also attacked my swallowing action, as during the summer I often choked on food or drink, especially just simple water, (heat agravates my CIDP, and sometimes causes a flair where I have to be hospitalized). I have a speech therapist and dietician that visit my home about every two weeks, besides the nurse and physical therapist who come by weekly. They gave me various techniques that help me with the swallowing process, such as putting your chin against your chest, which closes the windpipe so that the food or liquid will not go into your lungs causing you to choke.
But, this past summer, my Neurologist put me on Mestinon, which is basically solely used for a different disease, Mysthenia Gravis, (spelling). It took a few weeks, but I guess when it hit the right level in my blood, it seems to help me quite a bit. Now, only when I am very fatigued, do I have difficulty with the swallowing. Yesterday, I had another swallow test performed at the hospital, with two speech therapists and the radiologists. It was recorded, and I was able to see the whole test’s results on DVD. I saw, as they pointed out, where the various things they gave me would get caught at the epiglotis, (wow, I certainly am not a doctor and these medical words are not in my spelling section of my brain…lol). I told them that I was on the Mestinon, and how it helped alot and only with the flairs or fatigue, would I choke. They thought it was quite a good idea that my Neuro. put me on that, and that they would tell other doctors about it. (Mestinon apparently sends impulses to the nerves in that area, to get them to work better.)
My Neuro. has other patients with CIDP, though not as bad as I have it. He also has one patient who has the Myesthenia Gravis, which is what gave him the idea. If others of you have this same difficulty, and you have not heard of this, I hope this might be of some good news.
As I mentioned, it is hitting the various nerves contolling different organs. And as it attacks different areas, my team of doctors put me on various medications, to try to help fight against the attacks. (I was told by two of the doctors, to get my affairs in order, since they do not know when a flair will finally do me in, BUT they ARE trying to fight it.) So, far, it has hit the nerves controlling my heart, (my pulse rate will run from 120-130 or down to 40-50, although they put me on Altenolol to try and keep it between 60-80), diaphragm, (during a flair or fatigue, I am short of breath and use a BIPAP to assist me in breathing), bladder, (9 months ago, I had to catheterize myself using a straight cath. if unable to urinate within every 12 hours. Since having been put on Urecholine which causes the bladder to spasm, I haven’t used a catheter in months. But now it is starting to go the other way, having been incontinant twice in the past few weeks.), and in October it hit my stomach, of which any food in the stomach stays there, since the nerves controlling the stomach no longer work and the stomach doesn’t know what to do with the food. I have been put on Zofrin and Marinol, (the pill form of marijuana), for the nausea caused by the food staying there; Reglan and Erythromyacin to dump the stomach, (one of my doctors said that a side effect of Erythromyacin was that it “dumped” the stomach, and has worked well for me); and Zantac to “calm the acid in the stomach”. Since I am now losing a pound of weight about every two days, they also put me on Magase wo increase the appetite, as well as they said the Marinol would also give you “the munchies”, and yes, they both work well.
I have been told that it still has a few areas yet to hit, such as: the bowels, (I know bowel incontinence is due soon, since I don’t feel anything at all “down there”, and cannot tell when when I “go”. My physical therapist is now giving me excercises for the muscles in the anus area, to try and hold off the bowel incontinence. My Primary Care doctor has told me it will probably hit my eyes, (I am seeing an Ophtalmologist since, yes it has already started; as well as some other areas such as the liver, spleen, gallbladder, etc. My blood work is way out of whack at the moment, and right now they are trying to figure out where I have an infection since my White Blood count is sky high, at 22.1 and the differentials are high as well, (neutrohpils, lymphcytes, etc.), and my Prim. Care doctor has now sent me to an Hematologist/Oncologist to try and figure out what area has now been affected.
OOps-my nurse is at the door and gotta run. I hope any of this pill info or othe rinfo might help some of you…good luck.
AnonymousDecember 1, 2006 at 1:03 am
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.
AnonymousDecember 1, 2006 at 3:52 am
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,
AnonymousDecember 1, 2006 at 12:52 pm
Yes, I definitely have CIDP, (it hit my seral nerves first, then came the motor nerves).
Then it hit the autonomic system. I have copied off the net, details on Autonomic Neuropathy, from the Mayo Clinic, below. My cause of it was the CIDP.
The reason I put this original note in, was to mention what pills or other, that has been helping me cope, in case somebody is in the same situation, and can use some suggestions.
Your nervous system is made up of two parts. The core is your central nervous system — your brain and spinal cord. The rest of your nervous system, branching off from your spinal cord to the rest of your body, is your peripheral nervous system.
Part of the peripheral nervous system involves nerves that you consciously control — such as nerves you use to move your voluntary muscles. Part is your autonomic nervous system — the nerves that regulate the part of your nervous system that you can’t control, such as your heart rate, blood pressure and intestinal function.
Damage to your peripheral nerves is called peripheral neuropathy. Autonomic neuropathy is a type of peripheral neuropathy.
A number of conditions can lead to damage of the autonomic nerves. The most common cause is diabetes. About half the people who have diabetes eventually develop some type of neuropathy.
Other causes may include:
Alcoholism, a chronic, progressive disease that can lead to nerve damage
Abnormal protein buildup in organs (amyloidosis), which affects the organs and the nervous system
Autoimmune diseases, in which your immune system attacks and damages parts of your body, including your nerves
Some tumors, which can press on nerves and cause direct or remote damage (paraneoplastic syndrome)
Multiple system atrophy, a degenerative disorder that destroys the nervous system
Surgical or traumatic injury to nerves
Treatment with certain medications, including some chemotherapy drugs and anticholinergics
Other chronic illnesses, such as Parkinson’s disease and HIV/AIDS
AnonymousDecember 3, 2006 at 11:22 am
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:
December 7, 2006 at 5:27 pm
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).
AnonymousFebruary 28, 2007 at 4:02 pm
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!
AnonymousMarch 3, 2007 at 11:14 pm
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
AnonymousMarch 4, 2007 at 12:00 am
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…
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