Mayo clinic

Post by **tex** » Sat May 02, 2015 11:52 am

Thanks for the tip. I've added Dr. Parian to our list of "preferred" doctors.

Tex

Vanessa · Post by **Vanessa** » Sat May 02, 2015 11:55 am

Thanks for the info...on a side note I tried a water titration method to get off my Clonazepam. I know this is not a benzo support forum but I'm a little freaked out.

I was suspecting that my weakness and fatigue I was experiencing was a tolerance withdraw type situation since I've been on this 0.5 mg med nightly for a year now. Plus it's just not good to be on these types of drugs long term. All the symptoms I'm experiencing can be from this, MC, or mag def.

The process is you crush your pill in 100 ml of water and pull out 1ml a day as you feel comfortable reducing the dose gradually. Now this pill is fat soluable not water soluable. But I agitated the water and pulled out my ml quickly. Many people have had success in this. Oh my, I was ok the first part of the next day but then major withdraw sxs hit. That was April 29th. I won't go into everything that happened but I'm just now kind of feeling like my old self again. I tapered off this before without terrible problems and am wondering what the heck! I didn't have MC then.

Sorry for the long story, I am just soooo freaked. I akin it to brain damage because that is really what it is. I don't know if I'm strong enough to deal with physical sxs of MC, withdraw, plus the mental side of both. I was barely functional for two days. Mind you I should have taken 0.495 mg of a 0.5 mg pill. I shouldn't have been able to even notice this. For now I'm just going to accept and stay where I'm at knowing I have an ultimate goal. Thanks MC family for listening. I need a big group hug

Martha · Post by **Martha** » Sat May 02, 2015 12:44 pm

Love,
Martha

Post by **tex** » Sat May 02, 2015 2:23 pm

Tex

humbird753 · Post by **humbird753** » Sat May 02, 2015 3:43 pm

Paula

Post by **tex** » Sat May 02, 2015 4:25 pm

Vanessa,

I wonder if dissolving that tablet in water might make a drastic difference in the way your digestive system metabolizes it, and that caused the problem.

Tex

Vanessa · Post by **Vanessa** » Sat May 02, 2015 10:26 pm

Thanks for the cyber hugs. What an icky bleak couple of days.

Tex, I thought that as well since that can be the only reasonable conclusion. I made sure there wasn't a bunch of residue stuck to the glass by rinsing well and drinking that liquid too. I think dry cutting will be my answer once I get the courage to try that again. That's what I did before......guess who will be the first to go in the apocalypse.....

tonik319 · Post by **tonik319** » Mon May 04, 2015 6:33 am

Vanessa,

Good luck at the U of I. Yes, we need to keep our stress level down. I have been having some up and down days, but keep trying to stay positive. It will take a while for our guts to heal and just need to be patient (which is very hard for me to do).

Thanks for the advice on SCD.

Toni

humbird753 · Post by **humbird753** » Fri May 15, 2015 3:49 pm

I had an annual check up with my doctor at Mayo Clinic yesterday. For the most part I went to talk, but did allow her to go through some routine exams. I was very disappointed and I am less than enthused to report that Mayo Clinic still does not believe food has anything to do with MC. Although I thought she and I were on the same page during my last year's appointment, I found out it couldn't be farther from the truth. One of her last questions to me was, "so... what was the one thing that made you go on and remain on such a restrictive diet (mind you I am only gluten and dairy sensitive)"? I told her there was no other option. When your life comes to a complete halt (what life?), you do what you have to do. I also told her about all the good results I've had, and know I am in remission all because of this forum. I also reminded her that I asked her not once, but three times, what she or the GI specialist could offer me to help with MC and was told to stick with what I was doing. You'd think at some point in time they would actually want to ask us (those who have MC) what the symptoms really are and what works to put it into remission.

It is like their web site says - MC is just a nuisance disease that first of all they don't understand why people develop it, they don't even know what the symptoms are, and they also claim they do not know what to about it.

Very frustrated!!!!

This is the HUGE reason why we need the 501(c)(3)!!

Patricia · Post by **Patricia** » Fri May 15, 2015 8:03 pm

humbird753 wrote: This is the HUGE reason why we need the 501(3)(c)!!

I couldn't agree more with you, Paula! This is so frustrating!! So sorry to hear about your appointment.

Love, Patricia

care314 · Post by **care314** » Fri May 15, 2015 8:52 pm

Vanessa,

You are paying the doctors that you will see at Mayo for information, do not be intimidated. They are obligated to do their best by you. If you feel that the information is not relevant and useful, consider it a learning experience, and click it off your list. I learn something from every medical encounter I have, but it's my job to analyze the information and evaluate it for my own needs. Mayo is great, but no doctor is God, and you'll not be there long enough for them to get to know you very well. You know yourself better than anyone else. Have faith in yourself.

Vanessa · Post by **Vanessa** » Fri May 15, 2015 9:18 pm

Thanks for all of the great advice everyone! I have cancelled mayo and have decided to lay low for awhile. I am titrating my anti anxiety med and am going to only do those things I know how to do. I honestly think that trying to learn everything I can about this disease has sort of taken me down mentally. It is all I think about and that is not healthy....

knowledge is definitely power, but you have to know how to walk that tight rope. Balance has never been my middle name, actually it is Edith Mae. What were my parents thinking?

care314 · Post by **care314** » Sat May 16, 2015 9:53 am

Vanessa,

Good for you. Anxiety and stress are always lurking. The trip itself could cause more stress than you need. Making the decision to "do what you know" seems a good one. I, too, think I have to learn everything there is to know. and it's not going to happen, for me at least.

hoosier1 · Post by **hoosier1** » Mon Jun 01, 2015 10:24 am

Hi Vanessa,

My experience with Mayo was mixed. It seems when you find a place that claims (brags) to know more than the rest, it seems they actually know less (or at least are not open to "outside of the box" thinking). My impression of Mayo is that I was more informed than my doctors, which I think can intimidate them. They concluded that I likely have visceral hypersensitivity and that they likely could not help me. When I suggested some things to test and look for, they didn't seem interested. And I decided it wasn't worth my time and money, at the time, to repeat tests I already head done elsewhere.

I am currently being seen at Cleveland Clinic. Dr. Tracy Hull, who is actually a colorectal surgeon and dept head, is very nice and open to doing things that work for me. Can she help me? Time will tell. But at least I find her to be a kind person, which is more than I find locally. Dr. Hull works closely with their GI department so that is important. Very much like Mayo.

But what we all need is a Dr. House, and that physician is probably practicing in some obscure city and not at one of the major centers. Perhaps Tex and Polly are our Dr. House. I saw a urologist at Cleveland Clinic who told me he has seen some amazing success stories from people who have walked away from traditional, western, insurance-laden medicine. Another cool man.

For me, I have found the the best physicians are good listeners who aren't intimidated by the knowledge I bring to the table. And, they are willing to allow me to experiment on myself to some extent.

I continue to have problems, and there are days where I feel more like a Chron's patient than an MC patient. I just haven't explored the Chron's avenue lately as I am weary of the entire medical process. And, am a little weary of life in general.

hoosier1 · Post by **hoosier1** » Sun Oct 18, 2015 5:03 pm

Mayo was a bust for me (#1/2 for GI in US depending on poll). They basically said visceral hypersensitivity and they likely could not help me. They didn't seem very personable either. I felt like I was directing them.

Dr Hull and Dr Garg at Cleveland Clinic (#1/2 depending for GI in US depending on poll) are great. I especially like Dr Hull! She is a surgeon in the GI department and genuinely cares about her patients - you can tell. She even had a long talk about me with one of her colleagues on evening in Urology about neuropathy. She listens!!! She is open to "outside of the box" trials. Dr Garg is in the motility clinic. Nice person but I spent less time with her. I have seen Dr Hull a few times now. I just feel more comfortable at Cleveland Clinic, probably because of what the did for my wife back on 2000.

Both of these centers see the worst of the worst so they should have a broad perspective on how to help their patients. I am not sure it really plays out that way but I do have confidence in Cleveland Clinic. I have personally witnessed their miracles where other "centers of excellence" around the country had failed.

But with MC, I still find this blog to be the most helpful.