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Old 07-04-2011, 07:55 AM
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Dejibo Dejibo is offline
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Join Date: Jan 2008
Location: New Hampshire
Posts: 7,332
15 yr Member
Dejibo Dejibo is offline
Elder
Dejibo's Avatar
 
Join Date: Jan 2008
Location: New Hampshire
Posts: 7,332
15 yr Member
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Took me YEARS to get the GI team to understand that while this doesnt look like an issue, it can be very disruptive to a life. Once the chamber would get full, it just sat and got harder and harder till finally enough material would force it along, and it was so dried and hard by then it was painful. I started to use Prep H on my finger and I would go rescue some of it that I could reach to provide some relief. Then that became a routine because it would provide some relief at the back door for me. You can use KY jelly, or lube or other stuff to really wet your finger to go on your mission, but my choice was prep H. My lower region just wasnt getting the signal that it was time to push it on out. I felt my belly was ready and I felt my lower was ready, but even pushing I felt like I wasnt co ordinated and couldnt get the result I needed, because I was just making my face red, and not getting enough pressure into my bottom to make anything go.

My GI MD at Dartmouth Hosptial in Lebanon NH is making a documented case of me to put in the annual of reports so that others seeking the same type of help can see that other MS patients do have destruction of nerve tissue in the intestine. The lining of our intestine is almost identical to our brain, so if MS attacks the mylin or fat around the brain and eats into the nerve fibers, why cant it eat into the fat around our intestine and eat into the nerve fibers? Most wont put it together because the GI tract has its own nervous system and generally isnt well controlled by the brain, but if you consider that its been attacked the same as the brain would be...you get the answer.

Most folks take Reglan, and its normally well tolerated. Some of us get tics, twitches and grimaces from the drug and it can be permenant nerve damage, so I was tried on a whole host of meds till we had to order from over seas to get Motillium. it does the same thing as reglan, but somehow doesnt make me twitch.

Research gastroparesis. they have several forums out there with tips and tricks on how to eat better, and interventions to help. 50% of the population just takes the reglan and get on with their lives. Some folks have episodes where for 3 months its awful! and then all of a suden things get better for no reason. its like having a flair of MS only in your tummy, not in your head. Some folks have permenant damage from the attacks and have to stay on meds. I have now backed off to once a day with my meds, but wouldnt hesitate to go back up if needed.

Tremendous relief to know I wasnt weird, strange or alone. The MS team took a little longer to come on board till the GI team presented them with study after study or MS presenting in the GI tract. So, we are the pioneers in getting the MS teams to see that this stuff can nick the tummy too. You may meet with resistance, but the more folks that get documented, the more hope those behind us have.

Goodluck write me privately if you wish.
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RRMS 3/26/07
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Betaseron 5/18/07
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Elevated LFTs Beta DC 7/07
Copaxone 8/7/07
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"Thanks for this!" says:
dmplaura (07-05-2011)