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.

The WalMart by me charges $9.99 for SlowMag brand. I don't think that is a very high price today. It used to be 19.99, when it first came out, then $15.99 and now it is almost as affordable as the generic Mag64.

The Vit D on Rx from doctors is D2, and now we know it doesn't work. You seem to be doing better on the D3, so keep up with that.

The lotion available now ( I am still using my CVS product that was discontinued), is Epsom-It. It has the same formula it appears. YOu will want the body lotion version, which does not have fragrance added. Also there is a cream called Magnesium Sulfate cream by Kirkman. It tends to be more expensive for a smaller amount. Both are online if you Google them.
I really do like the lotion form. I use it on my wrists and inner arms at night. The skin is thinnest on the wrists and inner arms. I also use it on my left foot and ankle when it swells up. It helps me sleep, lowers my blood pressure, and in general keeps muscle cramps at bay.

The Walmarts near me (I've checked 4 of them) are out of Slow Mag--I wonder if they're in the process of discontinuing it?? However, Walgreens and CVS carry it and it is $15.99 both places. I noticed it now is a combination Calcium-Magnesium tablet--didn't it used to just be magnesium only--and it was called Slo Mag?

My granddaughter has severe cramps every month, and I thought this might help her--that's the reason I was trying all the Walmarts but after checking the internet, I found out who was carrying it.

This is the generic:
http://www.amazon.com/Generic-Magnes...keywords=mag64
free shipping from this seller.

If you live near a Costco, they will order it for you. My Costco normally carries several bottles behind the counter. Their price is around $5.00 or so, for a bottle of 60.

As far as I recall, there has always been some calcium in it.

SlowMag is listed on WalMart's online page. You could ask your WalMart to order it for you. They will do that.
http://www.walmart.com/search/search...straint=976760

Some doctors will order it on RX. I believe if you get that done, the generic at WalMart is part of their $4.00 generic program.
At least it was at one time.

Hi Judie!
As Kitt said, we aren't saying you have CMT, but honestly your symptoms sound exactly like mine. They are also not able to test for all variants, and the tests themselves carry a margin of error. I only had the test for HNPP done and the results said there was a 15% margin of error. I refused further testing, with my neuros' blessing, as there was ample evidence of what this was, and no treatment.
The wisest course of action seems to be following Mrs. D's advice as far as supplements, etc. and try to take the best care of yourself possible. Do everything that you can to heal that which is possible. If pain is keeping you from doing more of the things that you want to do, find a doctor willing to work with you for pain management. Pain can cause or exacerbate fatigue. Living with decreased muscle mass causes fatigue and pain as well. This is no picnic, but there are things that you can do to help yourself. Hereditary neuropathies also cover a huge spectrum of symptoms, onset, and disability, so don't be overly alarmed at anything your research turns up. No one can say with certainty where you will be five, ten years from now.
I am 50. Did you mention how old you are and I missed it? Also, I did not mean to sound so negative about driving and hand controls. I learned to drive late in life (37) so I have never been a great "instinctive" driver. It has always required extra concentration, which contributes to my difficulties.