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Median Arcuate Ligament Syndrome (MALS)

Digestive Health | Last Active: Jun 26 2:45pm | Replies (1189)

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@jmmb

This is so freaky!!! This morning I was thinking of you, I swear!! I have been so wrapped up with my health in other areas, the MALS has been on the back burner, But this morning I don't know why, I was like, oh I should send Kari a message to see how she is doing...I've been so busy all day and when I saw the email this morning I was like no way!! This is the first chance I had to sit down.
Well I dont' even remember what you know. I have continued to be sick, more than stomach issues. So when you recommended mals pals people there suggested my symptoms to be POTS and dysautonomia and they were right. So thank you because I would never have known these things!! I am on 2 liters of IV hydration daily. I am still dehydrated and they don't know why. Kidney dr. is sending me to mayo to see her mentor because she just can't figure it out. I am peeing out my sodium, but my blood sodium is ok, and I am peeing way to much but mostly at night. I can't get in until Oct. 22. Trying some meds for the pots/dysautonomia. Iron was low now that is ok. Had mri of head and back and my neck is really messed up, so in PT.
My daughter was suppose to get married in June in Jamaica, but she cancelled because of my health. They are getting married Oct. 4 on the beach in San Diego. This way I can drive and take all my hydration.....
How are you doing???

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Replies to "This is so freaky!!! This morning I was thinking of you, I swear!! I have been..."

@jmmb !!!!!! OH MY!!!! a lot has transpired since we last talked. I was diagnosed with POTS years ago, not as severe as what you are going through! I often thought if I could just go in for an IV occasionally I wonder if I would feel better. So strange about your sodium!! I seen Sandra Taylor at Mayo- she is a Nephrologist and she was incredible! So sorry to hear about your daughter's wedding, but amazing that she changed it to San Diego! Refresh my memory, do you have joint problems? I am remembering something autoimmune?? I am just curious if yours MALS, Dysautonomia is also related to Ehlers-Danlos? That seems to be a common triad I have noticed in a subgroup of us.