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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: What first?

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › What first? › Reply To: What first?

October 21, 2013 at 8:22 pm #4534
Barbara
Participant

Have wanted a neck brace to try for years but have never convinced anyone to let me have one.
THANKS
Graham

Hi Graham,
You can buy them on the internet, I found the ‘Philadelphia’ collar the best for holding the head in a good position with the neck and also, for supporting the neck. You do have to wash it daily and it’s best worn with a liner, to stop it making your skin sore (warning, the liners are as dear as the collars!).

For the Philadelphia Collar:
http://www.chaneco.co.uk/orthotic-product.asp?prodId=190&specialoffer;=

For the CoolMax Liners:
https://www.chaneco.co.uk/orthotic-product.asp?prodId=195&specialoffer;=

It may seem very strange when you first put it on because, as your ligaments are lax, you will more than likely have your head hung forwards but please persevere and you will soon feel a difference and reap the benefits.

Regarding your medical records and copies of your past scans, under the Data Protection Act you are entitled to your records and Radiology (usually in electronic form on discs, with viewing software, these days), simply write, phone or email the Medical Records department of the hospital and they’ll tell you how to go about it, most have standard forms to complete.

In the UK, if you’ve been seen within 40 days, you usually just have to pay an administration fee for the copying, otherwise there is a standard fee – but it’s worth it.
Regards
Barbara

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