Rare, disheartening and complex-And that's before I discuss my condition!

TheKernel74
TheKernel74 Online Community Member Posts: 3 Listener
edited March 2023 in Talk about your impairment
Hi-

I've had increasing leg/arm and (overwhelmingly) back pain for 20 or so years. Also punishing fatigue, intolerance of heat etc-essentially all the neuro goodies. Various MRI's have shown considerable Cerebellar atrophy, again getting progressively worse. I was misdiagnosed with ME/CFS in 2015, having been (finally) referred back to a Consultant I saw a fabulous Neurologist last week who is "95%" certain I have Complex Heriditary Spastic Paraplegia (Type 7).  I also have optic neuropathy, hearing loss, bladder issues-all the goodies I now understand can be associated with this condition. I am awaiting the results of a genetic test to confirm but it is almost a certainty (especially as my Father has many of the same symptoms and has again been repeatedly misdiagnosed).

So...

I am presently working and exercising as much as possible but it's getting more difficult. I'm new to this so really interested to hear about peoples experiences with the condition, and insights would be much appreciated.

All the best, Dan

Comments

  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,538 Championing
    Hello and welcome @TheKernel74 and thanks for explaining a bit more about yourself :)

    To help our members share their thoughts, I've just moved your post into our Physical and Neurological impairments category.

    It's positive to hear that you are exercising as much as you can, what do you find works best for you in managing any symptoms?  

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