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Susanne C. · 03-07-2014, 11:53 AM

Quote:

Originally Posted by St George 2013

My skin biopsy was only taken at the ankle and showed zero A and C fibers in my feet. I have not yet experienced any numbness except for my feet but have noticed the following: deep aching in both legs, same aching in upper right arm, teeth hurting and jaw. And new symptoms on the tops of my feet. I know the teeth and jaw thing are the SFN because this is what I experienced during chemo but not to the degree I have now. The only partial, able to deal with pain relief is 1/2 a vicodin 7.5 every 3 hours and 1/2 a Xanax when really bad which is quite often now. I, like you, have no idea what to expect in the future and it really scares me.

I am so sorry your daughter is having problems. That can be the most stressful thing to deal with. I admire your ability to be able to help your daughter and toddler with your condition. Bless you...your plate is overflowing. I am very thankful that my youngest grandchild (I have 6) was 7 when this started last year. They have been very helpful and I'm able to let them come whenever they want to because they are basically self sufficient

I'm not sure I could handle a toddler but probably could if absolutely needed.

You are one of the few people I've met with no fibers in the feet.

Wish I could be more helpful but I'm sure others will follow that can advise. That will help me too....thanks for the thread

Take care and I'll be thinking of you and your family and praying for everything to work out.

Debi from Georgia

Debi, I just went back and re-read your reply. Yes, I also have the aching in my arms, I had to give up sweeping and mopping ( so sad, right? ), the time I can spend on needlework is very limited, and I have been having problems with my jaw off and on. I hate the way this can affect any part of your body with pain and dysfunction. I would like to know more about the way your jaw is affected. Mine gets sore, I start having trouble opening and closing it, it clicks, and I had a ganglion cyst on one side that I thought was related to a cold sore- for some reason the son that has CMT and I both get weird nerve effects with cold sores and he has had recurrent neuralgia from shingles he got on the side of his face when he was 10, it is very rare in children.