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sue1234

Finally, Maybe A Cause For My Pots!!!

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FINALLY!! I have had POTS for 10 years, and the only thing they have tested for as a specific cause was the Mayo Panel of Autoantibodies. They were all negative. So, I've just followed the research as it came out to see what has been newly found. Well, this is what research I found 2 months ago, and then made an appt. with a local doctor that had written a study about it in Pubmed.

Median Arcuate Ligament Syndrome, or MALS

I had read where some of Dr. Abdallah's patients (Virginia) were testing positive for it, and then had surgery to fix it. Some of them found their POTS went away or lessened significantly, and their stomach issues were fixed. I also saw that Dr. Suleman in Dallas was testing his patients now for it, and finding some of his patients were positive, too.

So, I had the extensive ultrasound for it today, and apparently it was positive. I don't know the specifics of it, but will request a copy of the report tomorrow. The doctor (a cardiologist) told me he wants to schedule me for a CT scan of the abdominal arteries (MRA?) to get it confirmed by a radiologist. He said he right away wouldn't recommend surgery for me because I don't have the main symptoms, stomach pain and vomiting. But, from what I've read around on it, around 20% don't have those symptoms. I have the awful gastroparesis and bloating that can be associated with it, along with some other out-lying symptoms.

So, this could be my answer! Well, maybe or maybe not. But this is the first time I've had a "positive" on something that could contribute to POTS symptoms.

I just found this January article by Dr. Suleman on the subject:

http://hyper.ahajournals.org/content/66/Suppl_1/AP064.short

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Glad they found some answer for you. I never had the vomiting and was told by the vascular surgeon and the gi surgeon that this surgery would not help me. The vascular surgeon said he wouldn't do surgery on it. I met with the gi surgeon 4 times before I finally convinced him to do it. He said that the surgery wouldn't help my condition but he would do it solely to help the aneurysm of the celiac artery. Well a week after the surgery and I had no more gastritis, first time in 7 years and I could eat without the occasional pain. My surgeon on the follow up still said he was skeptical that it helped me because on paper it didn't make sense( since there are 3 or 4? other arteries that feed the stomach). My dysautonomia didn't like the surgery and it put me in a tail spin for a bit but am definitely better off and stronger than if I hadn't had the surgery. I have no regrets for getting the surgery done, except for moving 4 yards of bark the day after surgery not knowing the pain taking me to my knees was due to them cutting my diaphragm. Any questions you have let me know.

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Thanks to all for the encouraging words!

Lewis, did you have gastroparesis and/or bloating? I have gastritis on many of my scopes, so I guess that is attributable to the gastroparesis. I'm glad it gave you a positive outcome!

I am down to this (MALS) and waiting to have autoantibodies checked when they finish the study. After 10 years of researching what is out there contributal to POTS, and this is all the research has come up with!! So, I had the MALS checked, and positive! As I mentioned, it may or may not fix any or all of my issues, but getting some of them fixed would help. I find it odd that of the two things they find could cause POTS, I"m actually positive for one. I find that too coincidental.

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Ya know I totally forgot about the bloating! I haven't experienced it since the surgery so I forgot about it but it would feel like my stomach would just fill up with air sometimes. I still get some weird thing where I burp and my heart skips twice a day but no more bloating. I don't know how I forgot that since it was annoying and I'm glad it's gone. Gastroparesisas want a huge problem but I did have times when I felt as though the food I ate was still sitting in my stomach a day later and would burp the food I ate the day before. I could feel the bruie in my celiac artery when lying down and hard a thumping at night although my doctor said it want possible but was gone after the surgery.

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Sounds like the doctors need to widen their circle on what might be possible with this!

Good to know on the bloating. I get awful bloating often, and I cannot function when it is at its worst.

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WOOWHO! Happy for you Sue. It's sounds like you might have found your cause. I would pursue a doctor to get this taken care of.

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