do people sometimes get diagnosed wit... - Charcot-Marie-Too...
do people sometimes get diagnosed with another condition before getting diagnosis of cmt ?
I was diagnosed as having CIDP until I had the genetic test done that confirmed CMT
thankyou
Yes, this does happen quite frequently - anything from the real nasties like motor neurone disease or fredreichs ataxia (both lethal) to muscles sprains or arthritis.
However, if there is a genetic history - ie, other members of the family with similar symptoms, that automatically excludes quite a bit! It's not that difficult to diagnose, so I don't know why it can be such a struggle!
Karen
thanks very much,I have splints,ankle supports,neck collar,when I was little it was advised by physio that I wear a special type of boot and leg brace. I have got a diagnosis now,but reading about cmt it seems I have some symptoms,hammer toes,high arches,areflexic,a physio thought I had ataxia.went to see a neurologist,who was going to do nerve conduction testing,but he was over ruled by consultant above him,did have Mri which was normal.I have heard the nerve conduction testing is painful,thanks again.I dont have the champagne bottle legs though,my legs are just skinny !!
Hello to hypermobilecat ....
The only sure way of getting you an exact diagnosis is by getting your G.P. to refer you to see a Neurologist : The neurologist should confirm their diagnosis by various testing > > >
+ Physical examination, complete with patients, and their families history :
+ Blood Tests : Where phials of your blood, are usually sent to a specialist University
laboratory: Takes 6 weeks for results + (very expensive) ! Will identify TYPE, and GENE :
+ E.M.G. Test : Electromyography (EMG) is a form of electro diagnostic testing of yor nerves :
+ Nerve Conduction Studies : Nerve conduction tests how well, and how fast your 'LONG'
nerves are conducting electrical signals, from your brain to your muscles :
Yes, the testing is uncomfortable, as electrical probes measure nerve endings speeds
between the various nerve pathways in your body :
Best of luck to you ....
John .... (Glasgow)
thanks John,I think the physio I saw was thinking along these lines,I dont tend to tell my GP very much,I am under a rheumatologist,and I dont get to see her until January. thanks again for info.regards hypermobilecat
Dear Hypermobilecat,
Love your user name.
My poor father was diagnosed with something different regularly, from gout to heart failure and had four knee replacements as nobody looked a few inches lower and saw his feet and ankles. He died in great pain without being diagnosed. My sister and I both have CMT type 2 but no mutation diagnosed yet. We are glad my mother died before we knew what was wrong with us as she would have been heartbroken to know that my father had so much painful, unnecessary and damaging treatment for things he didn't have and could have been spared by proper diagnosis. Having said that it is possible to have other diseases which can cloud the issue as both my father and sister also have cervical stenosis which could (but hasn't in their cases) cause similar symptoms.
Best wishes,
RE Green
RE Green,thank you for your message,and sorry to hear about your father,at least with myself I get left alone as I have been told I cant have surgery,because of the way I am made.I have congenital dislocated hip,and I was told when I was 38 I would have hip replacement at 50,but now I am past that age and told its not a good idea.cant say I am sorry. I will look into CMT more thankyou again.by the way hypermobile is because I am hypermobile ,thought cat sounded good lol.
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