About

Member has chosen to not make this information public.

Posts (435)

Wed, Feb 5 3:23pm · Empowering patients to advocate for themselves: meet @kariulrich in About Connect: Who, What & Why

@jenniferhunter I had to come back today and re-read your response. I am going through a very challenging time in my life and I remembered your post. Thank you, your words brought peace to my mind today. Gentle hugs, hope you are doing well.

Tue, Feb 4 10:28am · Gastroparesis with severe symptoms! in Digestive Health

You may want to look at the MALS thread…. we have so many overlapping symptoms. I know it is difficult when you are looking for a cause of symptoms, however the MALS group may have some suggestions with management of symptoms? Just a thought… for me I have found I do better with carbs, and I have to take gummy fiber daily. Do you have pain after eating?

Tue, Feb 4 10:28am · Gastroparesis with severe symptoms! in Digestive Health

Do you know of a link that demonstrates that exercise by chance???

Tue, Feb 4 10:28am · Gastroparesis with severe symptoms! in Digestive Health

I use Sundown Natural Fiber Gummies with Vit D3 and ducosate. Also, make sure you are active… walking daily. Hope this helps 🙂

Tue, Feb 4 10:28am · Gastroparesis with severe symptoms! in Digestive Health

Never used Pinterest for recipes – GREAT idea! Thank you.

Tue, Feb 4 10:28am · Gastroparesis with severe symptoms! in Digestive Health

@shimmerpixie I just came across your original post, have you had your symptoms sorted out yet? I also have areas in my colon that are slow…. then some that are fast?? Anyways your symptoms sound similar and I have been diagnosed with MALS, FMD and EDS. Would like to know if you have had any vascular workup?

Tue, Feb 4 10:10am · Reversal of a fundoplication in Digestive Health

@robatk17 You are a complicated case. Having MALS is a controversial diagnosis, especially when you have other diagnosis, that will only make it more difficult to treat and cure. In your case, much like mine it is difficult to say what is Mals and what is my other diseases. Try not to discount the physicians too much, I am sure they are doing the best that they can given your situation. I know it it frustrating and there are times when you get angry. I sure have. You already know you are the your best advocate, and as far as treatment and options each of us are different. You are not text book case, no one is. MALS is a legitimate condition that really takes it toll. There has been very little awareness in what encompasses MALS and how it affects patients daily lives. I am so happy you posted here! We need more patients to be open honest about the obstacles we face, otherwise we will not move forward in improving our quality of life, Take thing day by day, keep a diary of doctors, symptoms, procedures…. it is a full time job just doing that. Know you are not alone. Keep talking through all this, that is why we are here! Your Mals friend, Kari I would be more than happy to try an answer any questions you have about MALS and if I do not know the answer, try a direct you to the appropriate person. Looks like you have a team of people on here already! This is awesome. Thank you again for posting.