Barbara, thanks for pointing out you posted that video. :cheese: I am fairly certain the hard collar will bring relief and also be somewhat diagnostic in itself. Have to ask you though and I know you are in the UK so medicine works differently (lived there two years as a teen) if you had head and neck injury and Diamox helps, have you had imaging, rephrase, GOOD imaging (upright MRI, Flex/Ext MRI or such?) to see what is going on?
Interesting about the head and neck injury connection. I remember when I was in what turned out to be the temporary IRB for CCSVI treatment, ahem, one of the questions was if I (patient) had had a head injury/fall as a child. And, I had two bad falls onto my head as a small child. Had a whiplash injury at about 21 y.o. also.
CT report said Pseudo Tumor Cerebri, but doctor told my mom that didn’t mean anything, so I went untreated until 2.5 years ago when I started Diamox.
I had a chiropractic adjustment. Hadn’t had one in a long time and my neck was so tight I wanted to give it a try. And, even my chiro commented that I adjusted (cracked) more than I usually do.. by a lot (my ribs too). Still, the pain didn’t start till 4-5 days after that. So ???
Imaging ? I’ve had a stack. I have posted an anotated one at:-
http://prettyill.com/forums/viewthread/712/
I’ve paid out a small fortune, as very few were done on the NHS and I ended up travelling from the UK to New York for main diagnosis of CranioCervical Instability (CCI). I’ve had about 4 recumbent MRI’s taken over an 8 year period. Flexion & Extension whilst recumbent, also upright MRI’s including flex.
Here in the UK, the only thing reported was a Partially Empty Sella, taken a few months after my accident and the NHS finally conceded to a 3mm movement, after the recumbent flex & ext taken in 2010. The treatment recommended for me here in UK is the ‘conservative treatment’ i.e. using the Philadelphia Collar 24/7 (originally connected to a body brace). They say surgery brings many risks (and many post- surgery problems) so seem very reluctant to do it.
I am stunned that your doc didn’t treat your Pseudo Tumor Cerebri! In view of this alone, I would be asking for a thorough endocrine check. How is your pituitary ?
With reference to the fatigue, muscle weakness, bone cracking and pain, you could be Magnesium deficient (I was grossly, despite serum Magnesium tests scoming back within normal range), so Epsom Salt baths/foot-baths, or Magnesium skin spray/cream, include more magnesium foods and consider supplementation of Magnesium and also Vitamin D (yes, this helps with the pain), see 3 posts starting at:-
http://prettyill.com/forums/viewthread/712/#3540
Did you read the NIH goverment doc on Magnesium Deficiency there, pretty enlightening eh ?
Barbara
(UK)