Hi Sarah,
It’s Barbara (from Chiari Connection International – Yahoo forum) good to see you on here!
I think most of us end up with physicians saying (or thinking) it’s too complex! The health systems are not designed to accommodate us really (in any country!). . . . and, whilst they get paid the same whether they ‘deal’ with us or not, this offers no incentive for them to help us. There are some wonderful people that will ‘stick their neck out’ but these are few and far between!
I may be wrong but I see indications that that’s all changing, so the ones who have listened to us (and believed us) and have embraced new science and trialed various protocols to help us, will indeed shine very brightly indeed! After all, we’re not really a minority group, there are millions of us worldwide, desperate for effective help.
So to summarise, you’re:
EDS
Chiari decompressed (unsuccessful?) 15 yrs ago
Craniocervical instablity (have you had fixation surgery ?)
Empty Sella Syndrome (have you been fully assessed by an endocrinologist for hypopituitarism ?)
Autonomic Dysfunction (POTS what type ? Have you found any effective treatment for this ?)
MS (Any effective treatment for this ? What made them determine it’s not ‘normal MS’?)
* You say you’re low in energy, are you supplementing B Vitamins ?
* You say you are loosing muscle strength, have you tried CoEnzyme Q10 &/or L-Carnitine ?
* The ‘wiggle’ sensation intrigues me, although you relate it to your pituitary, could it be circulatory ?
* Have you had your arteries or veins imaged ?
* Has anyone tested your adrenal glands ?
I’m having difficulty spotting all four disciplines of the recent doctors you were sent to see – I get cardio, neuro, neurosurgeon – who else ? Is the neurosurgeon Dr B at TCI ?
The sulpha allergy has been raised before, some doctors give Diamox anyway. Is the allergic reaction worse (or more dangerous) than having your brain compressed, that’s how I’d look at it. Is it worth a 3 day trial ? As long as your Potassium and Bicarb levels are ok (and your body is not too acid) you will probably know, in a short time, whether it’s helping.
Regards
Barbara
(UK)