[judiesva]

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?

[Kitt]

Have you been diagnosed with any kind of disease?

[mrsD]

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.

[judiesva]

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

[mrsD]

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.

Originally Posted by judiesva

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

[judiesva]

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

[Susanne C.]

Originally Posted by judiesva

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

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.

[Susanne C.]

Originally Posted by judiesva

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?

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.

[ShannEL]

Originally Posted by judiesva

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?

What is CMT? I am having trouble the same as you but no diagnosis yet..

[mrsD]

CMT is Charot Marie Tooth disease. It is inherited, and is genetic.

We have a thread about it here:
http://neurotalk.psychcentral.com/thread121564.html