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Living with Syringomyelia

Spine Health | Last Active: Oct 2, 2023 | Replies (69)

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@laniek

My twenty-something daughter was just told the MRI showed spinal syrinx.
Other issues in her health history:
Anaphylaxis, IGg verified allergies to gluten, dairy, eggs, soy, yeast; airborne spores, molds, grasses...; allergic to penicillin, allergic to whatever is used in vaccines.
Gets rashes in sunlight in late spring, summer
Has lost 2 teeth to spontaneous nerve death
Loss of hearing in one ear due to inflammation
history of fainting- no heart issues on examination
history of ruptured ovarian cysts
asthma
severe iron deficiency - undergoing series of IV iron infusions
sensitive to heat, runs hot

Inflammation seems to be a huge issue.
Has health partners via her current insurance

would like to see her at Mayo in Rochester

Advice?

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Replies to "My twenty-something daughter was just told the MRI showed spinal syrinx. Other issues in her health..."

adding - soon to meet to discuss celiac disease diagnosed from blood draws preceding MRIs for neuro symptoms.

Hello @laniek and welcome to Mayo Clinic Connect. You mentioned that you would like your daughter to be seen at Mayo Clinic in Rochester so I wanted to offer you the following link should you be interested in requesting an appointment for her: http://mayocl.in/1mtmR63

Based on her health history, having her seen as a multidisciplinary, teaching hospital that specializes in complex care sounds like a really good fit and plan.

Are you in state in MN or would you travel far?