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Old 07-09-2010, 09:45 AM
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teresakoch teresakoch is offline
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Join Date: May 2010
Location: Fort Worth, Texas
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teresakoch teresakoch is offline
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teresakoch's Avatar
 
Join Date: May 2010
Location: Fort Worth, Texas
Posts: 199
10 yr Member
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In re-reading your original post, it is entirely possible that the CIDP is what is causing his current problems; the MG is just a complicating condition. The doctors are probably treating the CIDP, but the fact that he has MG is going to make the treatment a little more complicated.

A couple of links that might help (print out copies and have them attached to his hospital chart for reference):
Drugs to AVOID with MG:
http://www.myasthenia.org/hp_edmater...nce.cfm#table1
A more expanded version:
http://www.myasthenia.org/docs/MGFA_...tionsandMG.pdf

Drugs that may aggravate MG:
http://www.mgauk.org/main/mgdrugs1.htm

There is also a PDF that you can download that talks about medical considerations for people with MG that is written for medical professionals: http://www.myasthenia.org/docs/MGFA_...onalManual.pdf
You may want to print out a few relevant pages for your dad's doctors/nurses, or you can refer them to the website.

Has he ever been tested for Celiac Disease? It is another auto-immune disease which is MUCH more common than most doctors realize. A lifelong gluten-free diet is the current "cure" for CD, and many people with MG find that their symptoms are helped by a GF diet as well. Some of the symptoms that are seen in CIPD may be caused by untreated Celiac Disease as well. Celiac Disease causes the intestinal tract to smooth out, which causes malabsorption of nutrients, which then leads to malnutrition and vitamin/mineral deficiencies, which many doctors believe MIGHT be underlying causes for many AI diseases.

Here's a link to more information about CD and GF stuff:
http://neurotalk.psychcentral.com/post8767-2.html
If he's been on a feeding tube, he has probably been GF for a few weeks, and that might skew the results of a blood test, but it can't hurt to ask to have it done!

Most doctors don't deal with that many MG patients, so they may not be "up" on all of the stuff that they need to take into account. A good doctor will appreciate you giving him/her as much information as possible (a "bad" one won't appreciate it, but give it to him/her anyway....).

I hope this helps. Be sure and get enough rest - you need to take care of yourself through all of this, too!

Last edited by teresakoch; 07-09-2010 at 10:02 AM. Reason: Added information about Celiac Disease
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