…and perhaps it is something else?

December 7, 2006 at 10:14 am

Hi Brian,
I just thought I would throw in the possibility of something else happening.
I have CIDP, (official dx in Jan.06, though went through hell for 3 years prior before they came to the final conclusion). I went through all the tests, (EEG, ECG, MRI’s, CT’s, etc., including a seral nerve biopsy).
Six months later, they wanted to see the progression, and did a skin biopsy. This showed that the CIDP was progressing, and that now had small fiber atrophy, which meant it was now hitting my autonomic system causing autonomic neuropathy. I had a bad flair in AUG06, in that I could not move my legs at all, arms very little, but most distressing was that I could not breathe well and unable to take deep breaths, (it had attacked the nerves controlling the diaphragm). Then it hit the nerves controlling the heart, with a pulse rate shooting up to 120-130, or down to 40-50. It also hit the bladder, and had to straight cath. myself until Urecholine helped contract the bladder until I was able to wean myself off the caths., though was told to watch carefully every 12 hours, and during a flair this wil happen again.
During the flair, I had great difficulty swallowing, sometimes even choking on my own saliva with it going down my windpipe.
I take plasmaphereses for one week monthly, and they gave me an early week of treatment to get me out of the flair, though some of the damage was unrepairable.

But, in OCT06, it hit the digestive system. (I was told it would keeping hitting different autonomic organs and processes as the disease progresses.)
Nausea was a constant companion, sometimes severe. I am alergic to the anti-nausea class of drugs, Phenothiazines, (e.g. Compazine, Phenergan, etc.), so I can only use Tigan, and for severe nausea, Zofran, (Zofran goes for over $20.00 per pill, and my insurance only allows me 9 pills per 30 days, so I use them sparingly).
What is happeing, is I now have total loss of appetite, eating a meal about every third day. I am losing about 1 pund every 2 days. When I do eat, the food goes into the stomach, and because it attacked the nerves controlling the stomach, the food now just sits there, thus causing the nausea.
It makes me feel bloated, and nauseous, sometimes severely. They now have me on Reglan 4 times daily, which empties the stomach, as well as Eurythromycin 3 times daily, (of which a side effect of this antibiotic is to empty the stomach), as well as Zantac 3 times daily.
Last month, they did another barium swallow test, and it confirmed everything the doctors were telling me. They recorded the test, and the two speech therapists that were there during the test, pointed out what was going on. It starts with the weakened swallowing process, with first some food or liquid having laryngeal penetration and pooling in the vallecula, (to put it in English, {lol}, the food or liquid goes toward the area of the windpipe and stays there with the possibility of going into the lungs). The disease has caused esophageal dysmotility, which means the passageway into the stomach is weakened, and is hard to get into the stomach, sometimes coming back up either having reflux into the pharynx, or even further coming back up causing vomiting or just simply going in and completely quickly coming back out.
I hate eating now, since I feel sick after a simple meal. The cramps are awful, I feel like I had eaten a ton of food, and the nausea is awful, (I have a huge supply of Tigan suppositories and my hand and glove are now a constant companion, LOL).
The doctors and my weekly speech therapist and home health care nurse, are all advising me to now get a feeding tube, since my hydration is now very decreased, as well as food intake is low. They tell me I can still eat if so desired, even with the tube, though the feeding tube guarantees the necessary nourishment that the body requires. I am still thinking about it, as I know it’s the next step toward, what my doctors have told me, (“get your affairs in order”). They also told me that it is now time to get a hospital bed, in that the head of the bed must now always be elevated, assisting the weakened digestion process. The main, and MOST IMPORTANT issue, is to keep the food or liquid out of the lungs, which causes infections, (I have been told by my Pulmonologist, that this is what is going to do me in–an infection of the lungs, where my body that keeps getting weakened, can no longer fight the infection off…they said to expect it to happen within the next 2 years, and describing where when a flair will happen, going on to a ventilator, and getting a severe infection from food or liquid going into the lungs). I have been given a pneumonia shot to help.

I know I do not have Celiac Disease, since I eat very little wheat products since I just never was that fond of bread. The nausea or cramps, etc. happen with ANY kind of food.
SO, I WANTED YOU TO KEEP IN MIND, THAT PERHAPS IT IS NOT CELIAC DISEASE. I could be so many other things, such as what has happened with the progression of my C.I.D.P., and it’s rampage through my autonomic system.
I have come to terms with my disease’s prognosis, and I think still waiting it to “hit me”, since I still talk to friends and family as if things are still okay…
But, I just wanted you to think of other things that could possibly be wrong with you. Your neurologist can confirm autonomic involvement through a skin biopsy, or you G.P. can confirm through the various tests, one being the Barium Swallow Tests.
I wish you luck in finding the culprit to your problems!
Ken Soden
Oceanside, CA