I'm a newbie for the AFO as recently my doctor suggested a Leaf spring AFO for both my legs. But I'm not sure how much time a day I can wear this and do I need to wear it all the time? Expecting some guidance. Thanks in advance.
Have you had terrible months of GI issues and the docs linked it to CMT? Im 3 months in of bloating, gas, some weird painful spot sometimes and occasional diarrhea and can’t find the underlying cause and most docs dismiss me. Is there truly a correlation or they’re just clueless?
Hi CMT family! 😊
For the first time, I was asked to remove my AFOs during airport security because the handheld metal detector alerted when they scanned my legs during my private screening. Normally, if the detector goes off because of my AFOs, I request a private screening and have the AFOs swabbed for additional screening.
Today, however, I was told I needed to actually remove my AFOs so they could be separately scanned. This caught me off guard since I’ve never had to do that before.
For those of you who wear AFOs and have experienced this, what has your experience been? Have you been able to request an alternative screening method, so you don’t have to remove your AFOs?
I’d really appreciate hearing what has worked for others and whether there’s a way to avoid this in the future. Thanks!
AFO work fine from Hanger clinic until her shoes hit each other!? She’s 17 and frustrated please any advice would be appreciated. CMTX high arches by the way
Hi all, I'm 39m from the UK . I have developed foot drop etc the last few months and following a referral with an ECG and Nerve conduction study with generalised sensory and motor polyneuropathy showing a predominantly axonal loss patten , pointing to hereditary neuropathy I have been told i.e. CMT
I have since been on the waiting list to see a neurologist since June for more investigations i.e. genetic testing for CMT etc.
It makes sense now why I wear braces etc even before this happened. To be honest it's not been a surprise but still coming to terms with my body changes as my symptoms are getting worse. For example I cannot drive my manual car anymore and now need to switch to automatic.
I do not want to wait nearly a year to see a neurologist so I have been thinking of going private but the costs for genetic testing ranges from £2.5 to 3.5k .
Is there a route to go private to see a neurologist then get the test done on the NHS or reasonably priced testing or free tests via studies etc ?
Any advice would be greatly appreciated.
Thanks in advance.