1. < Autoimmune Diseases

How do I successfully get an appointment?

Posted by bomo @bomo, Nov 28, 2022

I have Sjogren’s disease, have managed Type 1 diabetes for 47 years, and have had Graves’ disease and Graves’ ophthalmopathy. I was recently diagnosed with breast cancer (surgery in 2 weeks) and am having another biopsy on my neck. However, none of that even comes close to the anguish of two years of gastrointestinal distress that includes random vomiting and constant diarrhea (10 episodes before noon today) despite high dose anti-diarrheals. I have nearly passed out many times over the past month and my blood pressure was 88/56 at the radiologist. (And I haven’t even started radiation.) I have lost 19-20 pounds from my normal healthy weight. I also have nerve pain, intermittent numbness in extremities (not diabetes related) and my voice is impaired. As you might imagine, keeping up with my job running a business is challenging to say the least. When I got rejected by Mayo today, I was really deflated and not sure what to do next. Can someone please tell me how to successfully get an appointment?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

ilean | @ilean | Dec 5, 2022

Good luck. I was not able to get in either. I won’t live another 2 - 3 years. I weigh 101 pounds now and am losing a little less than a pound per week!

REPLY
1 reply
JSV0052 | @sjv1968 | Dec 6, 2022

I’m so sorry you’re going through so much. I also would suggest going through the online appointment request again and start by asking for a second opinion on the breast cancer diagnosis. Then once you’re in the Mayo system and at your first appointment, ask to be seen for your other illnesses. I wish you well! Please don’t give up!

REPLY
bomo | @bomo | Dec 6, 2022
In reply to @ilean "Good luck. I was not able to get in either. I won’t live another 2 -..." + (show)
@ilean

Good luck. I was not able to get in either. I won’t live another 2 - 3 years. I weigh 101 pounds now and am losing a little less than a pound per week!

Jump to this post

@ilean I am so sorry! It is really terrible. Have you been diagnosed with anything?

REPLY
ilean | @ilean | Dec 6, 2022

No. It has been since January and no diagnosis. I’m on my third GI. Made an appointment in July to see a GI at Methodist Houston and they called yesterday to reschedule for January! So frustrating. I am supposed to get an MRA done in the next couple of weeks.

REPLY
2 replies
ilean | @ilean | Dec 6, 2022
In reply to @ilean "No. It has been since January and no diagnosis. I’m on my third GI. Made an..." + (show)
@ilean

No. It has been since January and no diagnosis. I’m on my third GI. Made an appointment in July to see a GI at Methodist Houston and they called yesterday to reschedule for January! So frustrating. I am supposed to get an MRA done in the next couple of weeks.

Jump to this post

The appointment I made in July was for December 28th

REPLY
phoenix29412 | @phoenix29412 | Dec 7, 2022

This would be a shot in the dark, a needle in a haystack.... but maybe worth a try?
NIH National Institutes of Health
There are at least 6 different clinic sites in the US.

https://www.nih.gov/news-events/undiagnosed-diseases-network-launches-online-application-portal

Good luck!

REPLY
2 replies
ilean | @ilean | Dec 7, 2022
In reply to @phoenix29412 "This would be a shot in the dark, a needle in a haystack.... but maybe worth..." + (show)
@phoenix29412

This would be a shot in the dark, a needle in a haystack.... but maybe worth a try?
NIH National Institutes of Health
There are at least 6 different clinic sites in the US.

https://www.nih.gov/news-events/undiagnosed-diseases-network-launches-online-application-portal

Good luck!

Jump to this post

I will look into this!!Thanks so much.

REPLY
bomo | @bomo | Dec 7, 2022
In reply to @ilean "No. It has been since January and no diagnosis. I’m on my third GI. Made an..." + (show)
@ilean

No. It has been since January and no diagnosis. I’m on my third GI. Made an appointment in July to see a GI at Methodist Houston and they called yesterday to reschedule for January! So frustrating. I am supposed to get an MRA done in the next couple of weeks.

Jump to this post

Let's keep in touch. I am also on my third GI, and working on a fourth.

REPLY
bomo | @bomo | Dec 8, 2022
In reply to @ilean "I was also turned away by the mayo clinic. I have sever GI issues and now..." + (show)
@ilean

I was also turned away by the mayo clinic. I have sever GI issues and now weigh 101 pounds. I am losing one pound per week. No Dr seems alarmed by it.

Jump to this post

@ilean I did think of a few things that may (or may not) be helpful...

I was diagnosed several years ago with collagenous colitis. (Yes, it is as lovely as it sounds.) Two different dr's told me the "cure" is to take 8 pepto bismol chewable tablets a day every day for 8 weeks. (like 3 in the morning, 2 at noon and 3 at night) I thought it was crazy....but I was desperate, so I tried it. The first few weeks, nothing changed, but slowly over time, it actually really helped. I have started the regimen again, and now 2 weeks in, I am seeing improvement.

I also take powdered psyllium husk which works well (sometimes too well). And recently I was told to try millet -- which is surprisingly yummy -- and that seems to really be helping as well. I've actually had a few near normal days lately and I feel hopeful.

Of course, I am not a dr. I only wanted to share what seems to helping me stave off weight loss and function to some extent, while I continue to work to get answers from the medical community.

REPLY
1 reply
ilean | @ilean | Dec 10, 2022
In reply to @bomo "@ilean I did think of a few things that may (or may not) be helpful... I..." + (show)
@bomo

@ilean I did think of a few things that may (or may not) be helpful...

I was diagnosed several years ago with collagenous colitis. (Yes, it is as lovely as it sounds.) Two different dr's told me the "cure" is to take 8 pepto bismol chewable tablets a day every day for 8 weeks. (like 3 in the morning, 2 at noon and 3 at night) I thought it was crazy....but I was desperate, so I tried it. The first few weeks, nothing changed, but slowly over time, it actually really helped. I have started the regimen again, and now 2 weeks in, I am seeing improvement.

I also take powdered psyllium husk which works well (sometimes too well). And recently I was told to try millet -- which is surprisingly yummy -- and that seems to really be helping as well. I've actually had a few near normal days lately and I feel hopeful.

Of course, I am not a dr. I only wanted to share what seems to helping me stave off weight loss and function to some extent, while I continue to work to get answers from the medical community.

Jump to this post

Thanks for your input!!

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.