Hello Cherie,

Yes, I have read that thread and thankfully I have not had the severity of symptoms that Lefthanded describes. In my case the course of the three severe bouts have been more drawn out with periods of leveling off before new symptoms come on or the ones that were leveled off get worse again. I had TM, OT and other MS symptoms for around a year the first time in 1978, then for two years starting in 2000 and now coming up to 18 months on this go around.

The regional enteritis symptoms come and go but mostly it has been kept under control since 1978 with dietary restrictions. We found out 25 years ago during a bout of ON that my system can't handle prednisone due to liver compromise. OTC anti-inflammatory meds will sometimes set it off if I take them for more than a few days in a row. Both steroid and non-steroidal anti-inflammatory meds send liver function into the tank and the liver enzyme tests are all over the charts within a week. Once that happens it takes quite a bit of effort to get things back to my normal so I try to stay away from that stuff.

The only thing that seems to bring bouts on is letting regional enteritis get out of control and that usually is due to dietary sins of commission or omission. I occasionally still find out the hard way that poorly tolerated items have been in the food that has been served from time to time; and for the most part it seems to have been unintentional due to not checking labels during food preparation. Thus, I don't ever eat at other people's homes unless I've been helping to prepare the meal and that limits most shared meals to eating with family or my congregation. Similarly I seldom eat at restaurants or purchase prepared dishes and generally stay away from anything that I haven't prepared myself. The risk of having a reaction is just too great.
The abdominal surgeries that have been done (intestinal resection, gall bladder removal, adhesion release), along with invasive procedures like liver biopsy, have never gone well. There is always the hug and paralytic ileus following them. It is still uncertain if TM was involved in those post surgical and investigation reactions because by the time that those surgeries needed to be done, things were pretty messed up with organ and abdominal wall muscle function anyway.

I have found that uncontrolled severe pain can make many symptoms of demyelination worse; but again I don't know if TM is a part of that. An allergy to morphine and some sensitivity reactions to other pain meds cause paralytic ileus, subsequent abdominal distension with abdominal spasm and pain; and also drive pituitary/thyroid function into the ditch. That places some limitations on what can be used to control post surgical-type or severe pain. Remaining still or movement, meditation, massage, acupuncture, ice or heat have all proved helpful for different instances of severe pain, so I just choose what seems to be best for a particular instance and wait it out. Medication is a last resort.

I'm not sure about infections making symptoms worse because I don't actually experience much of that sort of thing. The last flu was in 1989 and I remember the year because it is so rare for me to get it. Have had a couple of colds but only a couple in over 30 years; and if I remember correctly they weren't associated with bouts. I haven't had any oral infections or root canals either; although I did have a lot of tonsil/ear infections as a child. The most severe infection I've ever had was peritonitis and that was in 1978 when I had surgery for enteritis (preceded by ON).

Yes, the neuro ordered the blood test for NMO but I'm not sure if it is being sent to the Mayo clinic. It is definitely being sent somewhere, or is being handled differently than the other blood tests that were taken because there was much ado about setting the tube up with correct labeling in the lab.

It sounds as though you also avoid most medication because of the adverse reactions, so I expect that even if NMO testing comes back positive, I will continue to do so as well. It is very much 'the devil that you know' thing isn't it?

With love, Erika