New problem in the last few weeks. Diagnosed with PN this summer. Symptoms ongoing for last 5 years. Numbess to knees and elbows. Extreme loss of what Dr referred to as "small muscles" in feet. Now I am having trouble holding/keeping pressure with my left foot on the gas peddle/brake. I feel that my ankle has no flexion at all-but when I try and bend my foot up it does flex upward. The issue is over the top part of my ankle, just dont have the strenth to keep my foot bent up at the angle to use gas/brake peddle. Starting gabapentin this week. Any ideas of cause or suggestions on what I can do to help this situation?

Have you been diagnosed with any kind of disease?

Losing muscle mass is ominous IMO. If you do have a form
of CMT...then there is no going back.

I guess it is time to investigate hand control options for your
car. I am sorry that it is coming to that.

I have CMT, and driving is very difficult. I only drive for very short periods of time, not more than 15 minutes, and never on highways. I also do not take pain medicine if i have to drive since my reflexes are already compromised. My leg cramps up quickly and I get severe back pain as well. My legs are numb to above the knee and I have visible muscle loss. I drive through a combination of muscle memory and watching the speedometer. I even have to be careful which shoes I drive in as some wider ones throw me off completely.

My doctor and neurologist have both suggested hand controls, but my hands are not without symptoms, and I don't feel confident enough to make the change. I am fortunate in that I have extra drivers at home and live very close to stores, doctors, etc. I do not expect to be driving at all in a few years.

I was dx with Fibro years ago. Always have moderate to extreme fatigue. This past spring/summer had the nerve conduction study done. Results: "Abnormal nerve conduction studies of the lower extremities and left upper extremity (three extremities) with electodiagnostic evidence of a severe sensorimotor polyneuropathy with mixed axonal and demyelinating featuers with more prominent findings in the lower extremities." I have no "jerk" reaction in knees or ankles. Kaiser did for CMT testing which came back neg. Had followup last Fri and neuro said that he is pretty sure that my PN is "hereditary." Starting gabapentin this week when I can get to pharmacy. The problem with being able to keep flexion and press on gas pedal/brake just started a couple of weeks ago. Replied on another thread today regarding the "vise" like grip I have had on both feet for years. It's such a PAIN. I always have the sensation that my ankles/feet are very tight and extremely stiff. I can flex my ankles for only for a short time. I can not point my toes without immediately having calves clamp up with sevre cramping. Also, when I bend my toes, which feels very tight, they too cramp and then wont straighten out! OUCH!! Any advice, thoughts is greatly appreciated.

Judie

I'd try some magnesium if I were you. It always works for me.
You can start with lukewarm water soaks for your feet. If you notice some improvements move on to an oral supplement.
Choose a chelated form (gluconate, citrate, malate, glycinate) or a delayed release like SlowMag. Aim to 1/2 the RDA.
Avoid products with Oxide in them.

here is my magnesium thread:
http://neurotalk.psychcentral.com/thread1138.html

Often magnesium can help with muscle cramping. And most Americans do not magnesium rich foods, and instead consume caffeine, alcohol, or other drugs which actually deplete it.
Diabetics lose magnesium thru the urine daily, and the reason for this is unknown as yet.

Thanks Mrs D-I read a post of yours several weeks ago (?) that suggested using SlowMag. Purchased some at Walmart and take daily (was surpised at the $$-another other brand to recommend-even through mail?). Also started taking B12 from Jarrrow several months ago. Back maybe 4/5 years ago, had vit D tested and came back with <10. Started taking the 50,000 units 1/wk for a month but never had any followup (kaiser). Continued testing by new rhemo showed it up to about 15. Given another month treatment. Year latter still in 20's. Figured out that need to take daily. I take 10,000 units D3 daily. Am followed by my hormone Dr. every 6 months. Was still low in dec and had it upped to 15k. Went back to 10k during summer. Last results were in the 60's (and I get the D3 at Walmart-5k units-I remember someone asking about quality of Walmart supplements and this one does work and for a really good price). Have not been able to find Magnesium lotion anywhere! Would diluting epsom salts in regular lotion have the same effect? Just reaching for anything that would help....

Thanks for the replies everyone!

J

I have been driving for years and years - since I was young and that's a long time ago. I have no trouble driving and never had trouble driving. CMT symptoms did not come along til in my 50's and then not much at all for many years. I know where my feet are - can feel as they are not numb. I don't have to look to see where my feet are as some people do. If you have to look to see where your feet are then it seems to me that hand controls are in order to drive safely. I've heard of people using a map light in order to see where their feet are. That certainly isn't safe. And this happens for anyone who has numb feet, can't feel, etc. not just someone who has CMT. And I am not on any kind of medication whatsoever. No pills of any kind including supplements.

There are many, many types of hereditary diseases not just CMT. I wasn't suggesting that you have CMT. Hopefully you will find an answer.

HI Kitt-interesting question/post about having to see where your feet are. I think I know where my feet are-I really have to think about that-Have a hard time walking in the dark, makes me feel unbalanced. Neuro's first thought was I had CMT-so therefore the testing. I think you might have commented on another post to me before with info about it. I understand that the genetic testing is always improving/finding new forms of CMT-I suppose every year a different sequence might be identified. Neuro is done with any kind of testing. Ran the whole blood gammet-nothing. Oh well, from what I understand at this point, there really isnt any magic pill to help if the cause is any form of hereditary neuropathy. any other hereditary form you can think of that would fit the symptoms of CMT? Starting the gapapentin for the burning, zapping, and all the other fun stuff. Do some people have fatigue from pn? I have been fatigued forever it seems.


Thanks-

J

Hi, As of 2008 there were over 50 kinds of CMT that have been identified so far and no end in sight. DNA blood testing for CMT thru Athena Diagnostics is very expensive if they have to do the whole panel of tests that they now can test for.

If you do indeed have a type of CMT you need a neurologist who is an expert in CMT to help you. No, there is no magic pill to help. CMT is progressive no matter what you do. There can be a rare mutation of CMT as well where there is no family history, etc. Also, anyone in the family could have been misdiagnosed as having something else. Or their symptoms were so vague that nothing was suspected. Or they could have died before any evident symptoms appeared.

I know of a gal and her brother who could not figure out where their CMT came from. However, finally it was confirmed in their father who was 82 at the time. It was thought that he had Parkinson's disease but not so. Had he passed away before that no one would have ever known where it came from and they would still be wondering.

There are so very many types of hereditary neuropathies so I cannot help you there. Again I am not at all suggesting that you do indeed have CMT. The fact that you have a hard time walking in the dark makes a person wonder though. I do hope you find an answer.

By the way, I do have pain but I live with it; at least for now.