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Mar 5, 2019 · Undiagnosed auto immune disease, put on Leflunomide in Autoimmune Diseases

I just links to very important articles and got a response today that they can’t access the videos or articles from work. Really, they don’t know how to print an email and look at it from home. 4 doctors got this info and that’s their response.

Mar 5, 2019 · Undiagnosed auto immune disease, put on Leflunomide in Autoimmune Diseases

All I can say is good luck because I’ve been going through this forever 25 years. I truly believe fibromyalgia as a catchall for other disorders that are comorbidities of connective tissue diseases. I am finally getting to the bottom of the real issues and most rheumatologist absolutely do not and will not take the time to figure out what’s truly going on. You must find somebody who will actually listen to you Instead of just dictating what they think instead of doing research. I’m having to train my own doctors in rare disorders and I’ve been right on every account.

Jan 31, 2019 · Median Arcuate Ligament Syndrome (MALS) in Digestive Health

Exactly. I have been diagnosed with gastroparesis, had to have my gallbladder removed, and I also had sphincter of Odii surgery. I also ended up with small bowel AVMs that had to be cauterized that was causing my anemia and now they’re checking for celiac disease as well in addition I also have reactive chemical gastrophy and severe chronic gastritis.

Jan 31, 2019 · Median Arcuate Ligament Syndrome (MALS) in Digestive Health

You really need to get a second opinion because it isn’t just about Separating the nerves. Dr. Hsu just something very specific that I’ve heard of no other doctor doing that make sure that nerve pain does not come back because nerves can grow back and if it’s not done properly you will end up back in the same boat. This is a major surgery and I would not have anyone cut on me until I had had more than one opinion

Jan 31, 2019 · Median Arcuate Ligament Syndrome (MALS) in Digestive Health

You are correct about comorbidities and one of them is fibromyalgia which is still miss understood by most of the medical community including Mayo Clinic who tried to say that I had Munchhausen‘s! I finally went to other doctors that were local and they found diagnoses that Mayo Clinic never even thought of even though I gave him every medical record every symptom every surgery every allergy everything. I ended up canceling the rest of my appointments there because they Cut and wrap their head around the idea that fibromyalgia is real although they have a fibromyalgia clinic and want you to go through a three week pain management class the cost $42,000. People I’ve been dealing with fibromyalgia for 25 years I don’t need a $42,000 damn class or to be told that I have Munchhausen‘s. Since I quit seeing them I’ve been diagnosed with four different rare diseases including MALS.

Jan 31, 2019 · Median Arcuate Ligament Syndrome (MALS) in Digestive Health

Whoa! Who is doing that? Do you have an artery compression or is it the ganglion nerves? I have never heard of anybody having robotic surgery for that and I am on the MALS PALS Facebook page that is extremely informative. They’re only a few doctors in the entire country that are capable of doing the surgery without having to have another surgery performed by a different doctor to fix but the first one screwed up. I would do a heck of a lot of homework before I loud somebody to do that surgery especially robotic and laparoscopic. If you’re not already on the mals pal’s Facebook page you need to get on it. Now only read what everybody has to say but they have a lot of documentation and list of doctors who are preferred surgeons for this particular surgery. We are finding out from a lot of people that laparoscopic ends up going to an open surgery later down the road. Which then causes more problems.

Jan 31, 2019 · Median Arcuate Ligament Syndrome (MALS) in Digestive Health

I am having the same exact problems you Are and have been to several vascular surgeons and GIs. You need to send your records to Dr. Hsu in Connecticut enjoying the MALS PALS Facebook page to learn more.