Sticky Blood-Hughes Syndrome Support
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Charcot Marie Tooth plus Hurricane Sandy

Hi thanks to APSnotFab for suggesting Charcot Marie Tooth. I went to my neuro who is now leanining towards this diagnosis. tell me something APS notFab, if you would, does your husband get terrible pains in his legs plus weakness as well? ive also been experiencing shoulder pain and got stuck in my sweatshirt the other day :D the topic the U.S. here on the east coast got socked with that hurricane. i lost all power and communications for six days, but so many lost their im lucky. God bless them.

2 Replies

Hi there!! I'm so glad you are safe and have escaped without too much damage. I remember being without power for 6 or 7 days after a hurricane when I lived abroad, it's very difficult but looking at some of the picture of those that really got hit bad it looks like a war zone or sunami has gone through so my heart goes out to those poor people.

As for my hubby and his CMT yes he does get a lot of pain in his legs but he has had orthotics put in his shoes which has helped a great deal and my understanding is that pregabalin can also help with the pain although he is not taking this at the moment. He has just had his appointment come through for the specialist so we will know a lot more then.

I'm glad you are getting somewhere too as getting a correct dx is half the battle x


I'm glad to hear you were safe during the hurricane!

I hope you get the answers you are seeking x


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