Passed the Nerve conduction study

Jon_sparky · 07-25-2014, 10:24 PM

Quote:

Originally Posted by Kitt

I know a gal who has CMT and also her brother. She is worse off. They never could figure out who they inherited it from or how else. Their mother was fine and so was their Dad. However, when their Dad got to be 80 years old he was diagnosed with Parkinson's disease. After a bit they checked further and found that he had CMT and not Parkinson's. So he was misdiagnosed. The gal and her brother had their problem solved. They now knew how they got CMT.

CMT symptoms can become evident when you are young, old, or in-between. Or they may never be that evident. People are misdiagnosed to this day. Symptoms of CMT did not come along til later in my life. But when they did, I knew what I was going to be dealing with from family history. I did not have that many noticeable symptoms at that time. No balance or gait problems then either. Symptoms vary greatly even within the same family.

As far as your balance and your gait not being affected, that can come along later. Can you stand on your tiptoes and/or your heels? Hope you find an answer soon.

Kind of feel sorry for the Doctors and researchers of hereditary neuropathy, they just can't get a handle on it... So many different symptoms, severity and time factors! I have had a lot of leg problems, bad cramping in the calf muscles and arches. Seems like enough indicators, to make a DNA test worthwhile. Since I am a cash patient, I am not having to get approval from a insurance company. With the DNA testing getting cheaper, $1,000 for the whole DNA chain, that becomes more affordable, and will be a good diagnostic tool. The companies testing one test for more are not going to stay in business. I am still thinking of just having my Rheumy order the test. The punch biopsy is going to be $500, so if that can be avoided... Though it might be good for a bench mark on the progression.
Thanks Kitt, very informative!

Jon_sparky · 07-25-2014, 10:41 PM

BTW Kitt, I cannot walk on my heals, but I can walk on my toes...Does CMT effect the Achilles tendon? My foot doctor wanted to cut both of them and make them longer, I ran from the office... (well hobbled) So, the effected areas are: Toes, arches, heels, ankles, calves, knees, hips, lower back, middle back, upper back, neck, and shoulders, elbows, wrists, and fingers. The neuropathy is effecting: feet, ankles, calves, hands, arms, shoulders, back, neck and head... Besides that I am fine.

echoes long ago · 07-26-2014, 12:08 AM

i cant walk on my heels either or even stand on my heels. i can only stay on my toes a few seconds. what does this signify?

Jon_sparky · 07-26-2014, 12:49 AM

Quote:

Originally Posted by echoes long ago

i cant walk on my heels either or even stand on my heels. i can only stay on my toes a few seconds. what does this signify?

Well CMT can cause muscles to weaken, so one of the tests, the neurologist will ask you to walk on your heels to see if that muscle group is effected. But it could also mean that you just have tight calf muscles, and need to stretch more. I have never been able to lay my leg flat and grab my toes, I used to try Hatha Yoga, and I always had to bend then knee...

Kitt · 07-26-2014, 09:26 AM

Quote:

Originally Posted by Jon_sparky

BTW Kitt, I cannot walk on my heals, but I can walk on my toes...Does CMT effect the Achilles tendon? My foot doctor wanted to cut both of them and make them longer, I ran from the office... (well hobbled) So, the effected areas are: Toes, arches, heels, ankles, calves, knees, hips, lower back, middle back, upper back, neck, and shoulders, elbows, wrists, and fingers. The neuropathy is effecting: feet, ankles, calves, hands, arms, shoulders, back, neck and head... Besides that I am fine.

For a CMTer it is a test for leg weakness. Nothing to do with the Achilles tendon. I could do it way back when and also stand on my tiptoes. But as CMT progressed I could do neither. I could get up on my tiptoes and slowly the toes would let the foot go down and the same with the heels. But it never really bothered me. Not til much later when all the other symptoms arose.

It sounds like you have lots of troubles and I hope you find an answer soon. Luckily you hobbled out of that foot doctor's office as you said. If you do in fact have CMT that doctor knows nothing about it and could do some real damage.

I could do everything and anything and I did do it for much of my life. But no more.

terig · 07-28-2014, 08:14 AM

hello out there....I had a NC study last November and they found slight findings in my right calf and right butt...possible radiulculpathy but unlikely....I am walking with a walker full time now, the calf spasms have passesd, I have slight burning in the calf , and butt is not cramping now....my neurologist just keeps saying come back every 3 months ? It all started with right foot/leg drag 2 years ago, lots of twitches everywhere in in that right foot I now have high arch, toe drop...and this is the same toe that had a tremor....what's going on....should I ask for a repeat or a biopsy ?

Kitt · 07-28-2014, 08:53 AM

Quote:

Originally Posted by terig

hello out there....I had a NC study last November and they found slight findings in my right calf and right butt...possible radiulculpathy but unlikely....I am walking with a walker full time now, the calf spasms have passesd, I have slight burning in the calf , and butt is not cramping now....my neurologist just keeps saying come back every 3 months ? It all started with right foot/leg drag 2 years ago, lots of twitches everywhere in in that right foot I now have high arch, toe drop...and this is the same toe that had a tremor....what's going on....should I ask for a repeat or a biopsy ?

Is there any family history of things like this happening? With something such as CMT a good neurologist who knows CMT would be of help. DNA blood testing is also available but very expensive. CMT is of the Peripheral Nervous System (PNS). That is outside of the brain and the spinal cord. As you may know, CNS is the brain and spinal cord.

I see on your profile that you have Central Nervous System (CNS) problems as well as myofascial problems.

http://my.clevelandclinic.org/disord..._pain_cmp.aspx

Hopefully, you will find an answer.

Similar Threads
Thread	Thread Starter	Forum	Replies	Last Post
Nerve conduction study done on infected area? And a flare up or Spreading?	Angelina55	Reflex Sympathetic Dystrophy (RSD and CRPS)	16	02-10-2013 06:23 PM
What does it mean? Nerve Conduction Study?	SeamsLikeStitches	Peripheral Neuropathy	8	03-07-2007 04:30 PM
Just got my Nerve Conduction Study! BZZZZZZZ	SeamsLikeStitches	Peripheral Neuropathy	1	03-06-2007 07:56 PM
Doc wants to do another Nerve Conduction Study!	SeamsLikeStitches	Peripheral Neuropathy	7	02-28-2007 10:17 PM
Question on Nerve Conduction Study on Legs??	Junie	Peripheral Neuropathy	33	09-16-2006 01:26 PM

Site Navigation

NeuroTalk Online Support Groups

Passed the Nerve conduction study

NeuroTalk Forums