i have had pain and weakness in bilateral hands which is increasing within the past few months. My hands, wrists and arms are numb while I sleep and this wakes me up several times per night. When I wake up in the morning my hands are difficult to open and when I do get them to move, they sort of flick open where the hand meets the fingers. ( Sort of like a trigger finger if this makes sense). During the day, my hands are very weak mostly in the palm -heel side of hand. I have no grip. This doesn't feel like CTS, although my neuro said people with PN are more prone to having CTS?

I have SFN with an acute onset after receiving a lumbar steroid injection. I woke up 2 nights later and it felt as though my big toes were chopped off. This was followed by electrical zapping, burning, excruciating pain in my feet and legs. I later discovered that the steroid called Kenalog was used. It is not FDA approved for epidural injection. It was used off label. It also contains benzyl alcohol which is a neurotoxin.

The epidural was done in October 2013 and my symptoms have been progressing ever since. I'm not certain if epidural caused this or if it triggered it to come out. I've had many tests and it has been labeled idiopathic by neurologist.

So I am taking supplements, amitriptyline at bedtime, and Vicodin as needed during the day. I tried both Gabapentin and Topamax but was unable to tolerate.

So I'm wondering if anyone can share their experiences? I am also wondering if this could be a sign of CMT? I have not done any of the genetic testing. My feet don't have any of the hallmarks but I'm learning that that isn't always apparent. Also I am a 50 year old female.

Thanks for any thoughts!

Could the hand/arm issues be work related, an RSI of some other sort?

You might want to read on our thoracic outlet syndrome forum (TOS) for short...
What you describe sounds very familiar to the symptoms of TOS>...
here is the useful sticky thread on the TOS forum- post #1 there is a crash course of info links.. and some related things.
http://neurotalk.psychcentral.com/thread84.html

Many drs do not fully recognise TOS or the symptoms... so be aware of that...

I can't really say that it could be CMT. Sounds like your symptoms are awfully quick. Anyone in your family have symptoms such as yours? You could do DNA blood testing which is very expensive especially if you test for all the types they can now test for.

As far as your feet you can be flat footed, normal or high arches. You will also find this in the general population along with hammer toes, etc.

Hope you find an answer.

I went through a period about seven years ago when my hands really flared up. It was diagnosed as bilateral carpal tunnel with a pinched ulnar nerve.
This was before I was diagnosed with CMT. I had numb feet and leg pain for many years before this but never pursued a diagnosis. Later I was told by another neurologist that bilateral carpal tunnel should have clued them in to ask more questions which would have led to a diagnosis sooner.
I was sent to physical therapy at the time and it helped enormously. I was unable to hold a plate or take laundry out of the washer before PT. I regained at least 75% of my strength.
The strength in my hands is failing again and the burning and pain wake me at night, but it is gradual and expected this time.
As Kitt asked, any relatives with CMT or neuropathy symptoms? It can even be your children, two of my sons have definte symptoms.

Thank you for your reply! I went to visit my uncle in Florida in March. His health is failing and he wanted to see me. I haven't seen him in 2 years. When I got there I was shocked at his physical appearance. He is a tall man and was always big but not fat. He now has severe scoliosis, his hands are sort of contracted in flexion, his feet seem flat and he walks with a high step gait. He has 2 bad hips that have been replaced and a history of lumbar spine surgeries. He tells me that he has had neuropathy for years. So I naturally wonder if he has CMT? I have no other family members that have any signs of CMT, although that side of my family is mostly gone now.

My symptoms began in my big toes and progressed up my feet, legs and now hands and arms. This all began after a epidural steroid injection. I did have an EMG study which also showed distal leg large nerves also involved.

The hand problems are fairly new and so I thought I would ask if others have any ideas. I've been through so much since this began so just like other forum members I'm trying to solve the puzzle, and trying to live with the pain and limitations that is now my life!

Which side of the family is your uncle on? Your mother or your father? You can have evident symptoms of CMT when you are young, old, or in-between. Or you may never have evident symptoms but still can pass CMT on.

I know a gal and her brother who have CMT. They could never figure out where it came from. However, when their father was 80 they diagnosed him with Parkinson's Disease. However, further testing confirmed CMT. That is who they got it from - their father. If he had died before that they never would have known.

It's my father's brother and he will turn 80 this October. When I last saw him 2 years earlier he didn't appear the way he does now.

I guess I'm also wondering if genetic testing is expensive and or covered by insurance?

You could call them and find out. Here is their site.

http://athenadiagnostics.com/conditi...ral-neuropathy

It can be very expensive if you have to test for all of the types of CMT that they can test for. Not sure if insurance covers it or not.

If indeed your father's brother turns out to have CMT then your father would have it but not noticeable symptoms. CMT does not skip a generation. That in turn would be where you would get it from if indeed you do have CMT. Keep in mind that I'm not suggesting that anyone in your family has CMT. Hope this helps.

Sorry for butting in but just a quick question about the numbness in hands, wrists and arms that Lukesmom mentions, is this not typical PN?