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My name is Donnamarie, I've had gastroparesis for about 13 years, constipation too.

Posted , 3 users are following.

donnamarie29088
donnamarie29088

Hi, I'm looking for help. I've been going back and forth all over the USA paying for flights, packing up, paying for high expenses too numerous times to say and always in the hope that "Yes, this time I'll meet the best MD, the one who will be able to truly understand what is wrong with me (Please God, I hope so) because if I have to add anything he or she will cross me off the list totally and I'll be listed on the "naughty/bad patient list." It may appear to be funny to some but I assure you that most of sadly do very much understandably very clearly this fine walk line in which we constantly walk. Basically I have been suffering from gastroparesis for at least 13 years and since I'm a woman in my late 50's now, the gastroparesis has become worse. I also have another little friend which goes hand in hand with gastroparesis which is slow transit study. What that means is that the waste in your body, the stool, can stay in my body for 2-3 weeks long which causes pain and distention. Thankfully I am taking some medications who can help but it's just like putting a band-aid on. So I'm appealing to anyone who will this to please write back if you have a specific Gastroparesis MD that indicates that on her/his profile and I will be eternally grateful! At the present time, I eat almost nothing, I drink so much water, my MD wants me to take Lactulose all day long which does clear out the intestines but I vomit the very little bit I eat from it at all. Thank you everybody for listening patiently to me! I am really just trying to feel so dreary, lifeless and so exhausted so often. I live life and I won't accept the answers of rude and indifferent doctors that this is it because I know better! Thank you all so very much!

0 likes, 4 replies

4 Replies

  • EdEire
    EdEire donnamarie29088

    Posted

    how would you describe best MD?

    the one that has good rates?

    the one that has answer for you?

    or the one that does what you want?

    now on another side..it must be hard living with such a burden. i really hope that you will find piece and answers to your conditions.

    take care Donnamarie

  • lester90053
    lester90053 donnamarie29088

    Posted

    You have not indicated some of medical institutions you have been to so it is difficult to make a recommendation. However one would be the Mayo Clinic.

    • donnamarie29088
      donnamarie29088 lester90053

      Posted

      Dear Lester,

      Thank you for writing and yes, you are correct, I did not list any medical institutions that I've been to. So far I've been to numerous MDs at NY Columbia Presbyterian Hospital System and NY Cornell Wiell. In addition I've been seen at Tampa General, USF in Tampa, University of Miami, Mayo Clinic in Jacksonville FL, and numerous other clinics in Florida who have called themselves Motility Disorder Specialists. Unfortunately I have learned from experience that there are not many true gastroenterologists who truly specialize in gastroparesis and palsy of the gut. What happened to me is in a nut shell was that in the early 1990s I moved from NYC to suburban NJ, a very high state for the ixodes scapular (deer/Lyme tick) and was bitten at least 10-15 times by ticks not just carrying Lyme disease but also carrying numerous debilitating co-infections. It went undiagnosed for about 14 years and went into my brain causing permanent neurological damage and hence the permanent paralysis to not just my stomach but also to my intestines. I have spent a ridiculous amount of money and simply do not have anymore to continue to see doctors who will not be able to help me really find a real solution and that's why I'm asking if anyone knows an MD who has successfully treated them.

      Thank you very much for your time and if you, Lester, or anyone you may know have any suggestions, I would be so thankful!

      Donna

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