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@fmdadvocate I have a history of cluster headaches, I also get headaches daily. I tried botox from a local nurse here that does it and NO HEADACHES! This was not through my insurance or anything so it was expensive. Has anyone else tried it?
Awesome news about being included in the registry. Mayo was part of the patient registry, for many years. I am sure there is a valid reason they opted out. I am doing ok…. gearing up for my yearly MRI/MRA this fall. Seems each time they find something new, so it always makes me a bit anxious. Last time they found a AVM that I had not had in any previous MRI/MRA's. I have not researched FMD and AVM's much.
@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.
@jmorgs I am so sorry to hear what you and your daughter are going through, and it looks like you have a bit of rough journey ahead but you are not alone. This is an awesome group of people, many who have been through what you and your daughter are experiencing now. She sounds like she is a strong surgical candidate and that surgery could minimize her symptoms greatly. Because of her added diagnosis it is always a bit more challenging. Recovery for me was long, however I had an open surgery/bypass. I think many people have long recovery, it is much like having a complete hysterectomy for open surgery. 6-8 weeks of the initial recovery then it is slow going but progressive change of symptoms over a years time. It is a differ recovery in that you feel better after surgery, but your body takes time to adjust to having blood flow. Many people who have surgery ( who don't post here) are completely recovered and do well after surgery with no residual effects, so please keep that in mind when reading posts. I just like to mention that because it can be overwhelming with reading others experiences.