kariulrich, I can relate to your situation, with low BP, tingling hands, short-breath, fatigue,muscle pain, and no answers from Drs. and tests, and you don't know if meds are the cause or the cure of it! I have had to ask for lower doses (I am elderly) but they are not happy about that.
Negative tests don't mean you suddenly feel good. I think most Drs try, but the body is so complex that so many things can go out of whack and not be traced. We have to keep being detectives on our own, and stay optimistic -- one of my problems, I tend to start worrying and then get anxious, and that doesn't help. joan t10.

@joant10 I agree negative tests don't mean you feel good and everything is ok. This is when I start to feel like some of the drs. think I am looking for something to be wrong. My GI dr. said when I got to Mayo, "Well you have been to 3 GI drs already so why are you here and what do you think we can do?" Can you believe that? My last GI dr. sent the referral for follow up with SIBO since she didn't have the capability for testing and follow up. Plus I had 3 positive sibo tests over 2 years. I took their test, different then the others I have taken and she said, "You don't have SIBO" I was like how can 3 other drs and tests from 3 different labs and hospitals be wrong. She said I could of just got better. This is what is so frustrating. My vascular surgeon however is wonderful. Well good luck to you and I try to stay optimistic so I hope you continue to also.

Hi @jmmb,

I’m so sorry to hear about your experience with the GI department. Please be assured that Mayo Clinic would want you to feel comfortable and confident about your care and your time at Mayo. I’d sincerely encourage you to call the Office of Patient Experience, and speak to someone about your concerns:

Office of Patient Experience
Mayo Building, lobby level
8 a.m. to 5 p.m., Monday–Friday
507-284-4988

Staff are available to discuss comments or concerns you may have regarding your medical care. Your experience certainly sounds like something Mayo Clinic would want to act upon. Let me know if I can help.

Thank you for sharing some very wise insight, @joant10. I sincerely believe that most doctors want to do a good job and help their patients as best they can, and we can maximize their (doctors') ability to help by also taking responsibility for our own care.
There is a saying, often quoted in medical school: "A patient's body frequently fails to read the textbook."

@joant10, we're so glad you've joined this discussion; may I ask what brings you to this group?

Thank you @kanaazpereira . I just don't like to cause any problems. I don't want anyone to get 'in trouble' if you know what I mean. I will call and ask about the collaboration part though. Like I have said, I do love my vascular surgeon. Maybe I can get another opinion from the GI dept. and that would make me feel better.
Thanks again.

@jmmb There is a GI doctor at mayo rochester who understands the vascular nature of MALS, but I have seen several also who are not familiar with this diagnosis, but with that said they are specialist and usually hand you back to your primary. In my experience GI does not follow chronic MALS, however they should be communicating with your team of physicians. I believe that since MALS is so rare there is not a good understanding of the disease, especially when all of our GI test come back normal. It can be quite frustrating. There has to be a better way to educate our physicians and specialist in what we experience. MALS dramatically affects the quality of life many of us lead, and it can be quite severe at time. What makes this diagnosis difficult is that some MALS patients do not have symptoms return, unfortunately for those of us who are chronic MALS patients we become more complex to treat. What I recommended is keep communicating with all specialist and advocating for yourself, tell them your concerns as you stated here. I do not know of one physician who would be opposed to hearing your frustrations and your experience. I have always shared the good and bad with my doctor's, you would be surprised how open they can be once they have a complete understanding of the problem.

Thank you @kariulrich. by the way my name is Jill. I just got done joining facebook and the MALS pals. I never had a facebook page because of being a teacher and all the kids kept asking me if I had one and wanting to write me. I didn't want any issues, take any chances , with the way the world is today unfortunately, so I would just give them my school email. I miss them....Anyway, I feel so old not knowing how to navigate the site!!!! I totally understand what you are saying. I guess deep down I was hoping, wow Mayo, I'll go there get answers and be fixed!! Yeah right!! At least I understand more about MALS that is for sure, but mostly from you and others on the site, and of course research. This site has been wonderful in that I know I am not alone, or crazy or a hypochondriac. I just feel that the surgeon is really focused only on the vascular part, even though it does effect the GI stuff so they should work together. I was thinking of asking for another GI dr. there for a second opinion. I am in Arizona and I couldn't make a trip to Rochester, but I have heard their GI is the best....Well thank you again for your advice and support. I will see what happens on Wed.'s appt.

Curiosity about what other people are experiencing, and maybe connecting with others with the same kinds of situations. Always interested in medical matters.. JTB