Newly Diagnosed CMT

[Guest guest]

Before I begin I apologize for the length of this post!

I was always a clumsy child my shins look like someones spine becaused I tripped

up the steps so often. Running would cause shooting pains throughout my ankles.

As I went into my teenage years I began spraining my ankles pretty consistantly.

Once just steping on a crack in the side walk the wrong way. I have broken my

right ankle twice and splintered my left one once.

In my 40's I began having numbness of my handsthat also became very painfull. I

wore wrist braces for months 24 hours a day. I had constant pain throughout my

body. My Dr. at that time suggested it might be MS it wasn't. Over the past 20

years I have gotten increasingly worse with but very slowly. I've had 3 other

Dr.'s suggested I might have MS. But then dismiss the possiblity. In my early

50's I was dignosed with Fibromyalgia. That explained a lot of the pain but

still didn't explain my numbness. During this time I was still experiencing

sprained ankles.

About the time I turned 58 (in January) I began being angry. I have never been

so angry. I told my wife (a nurse) about my anger. I said I feel like a

hypocondriac. She assured me that I was not. I have been to my PCP many times

with these complaints. She simply blamed everything on Fibromialgia. I have hit

my head more times that I can count, I have the worst balance I fall all the

time.My PCP suggested that I use a cane and a walker. I was mortified! My wife

believed that I had MS. I began a quest and found a lot of information about MS

I found a site that listed 47 simptoms that people with MS have. I had 32 of

those symptoms. I made an appointment with my PCP and gave her the list. I told

her I Need to know what is wrong with me. She referred me to a Neurologist (over

the last 20 years I have been to several)

The neuroligist spent a lot of time talking to me and having me walk testing my

reflexes. He said you have perifrial neuripathy, likey cause by CMT. That was on

March 10, 2010.

It had a name!! This thing that has been making my life so difficult had a name.

Since then I have spent some part of everyday researching this and finding as

much information as I could. I have been using a cane for about 6 weeks, today I

bit the bullit and used a walker to take a wals with my dog. Much to my surprise

I was able to walk where I wanted at a much faster pace than I have had in

years. I couldn't go for a long walk, but it was a start.

I do have some questions (if I haven't bored you with how long this post has

become)

I have a lot of trouble with leg cramping, not the usual calf cramp but on my

inner thighs or along my shin toward, but the worst one is when my ankle turns

inward and I can't move it with out standing on the floor.

Has amyone experienced this?

A new symptom I've just started in the last couple of weeks is waking up with my

second toe on both of my feet being completly numb until I get up and move

around. When sitting the other night at a concert, the last 3 toes and all the

way up my upper calf became numb, even moving around didn't help. Ever since my

small toe and my anle have a definite loss of sensation.

Has anyone encountered this?

If you've made it this far, thank you for listening. I have so many more

questions that I would fill a book so I'll stop with these 2 questions.

Jay

[Guest guest]

Jay,

Sounds like your cramping is coming from the peroneal muscle/nerve. While I

don't experience cramping anymore, you might want to review your diet to see how

much calcium and magnesium you are absorbing, if it is too low, ask your doc

about supplements. You may also want to consider drinking Tonic Water (like

Schwepps) it has Quinine in it which is a muscle relaxer. If that helps, talk to

your doc about a prescription of Quinine or other relaxer.

As for numb toes, massage your feet/toes morning and night with a thicked lotion

and make sure your shoes have a wide toe box, also changing shoes during the day

may be helpful.

You may want to read " Numb Toes and Aching Soles " and " Nutrients for Neuropathy "

by Seneff.

Gretchen

[Guest guest]

Hi Jay, your post was not boring at all!! It's nice to meet you. Thank you so

much for posting..you gave me courage to post and ask questions too. I read

everyones posts every day but have only posted once I think (forgetful too lol).

I am 41 and was just diagnosed with CMT, so was my oldest daughter (21yrs) and

my son (15yrs). I said the same thing you said, there's a name for this!?!

I'm not sure knowing a name for these issues I've had my whole life relieved me

any... I didn't know my Dad has CMT until a physical therapist asked me if

anyone in our family has ever been to the dr. to have their feet looked at,

knowing that I had my Dad's feet (high arch).

I gave him a call and asked if he had ever had his feet looked at and he said

yes, I told him that the Physical therapist thinks my son and I have CMT (I had

NO idea what CMT was) and my Dad told me he was diagnosed with it in 1991 but

as a child he had tests done at a childrens hospital but they didn't call it CMT

back then they thought it was MS as well if I remember right.

I have a terrible burning in my little toe on my right foot that keeps me up at

night sometimes and that bothers me in the daytime as well, now for my little

toe on my left foot the MDA doctor said that I have broken it sometime...it's

soooo numb that I didn't even know. When the doctor did tests on my feet I had

very little feeling and also in my hands.

Dr. said I have no grip or strength. Lately I have been trying to surf the

internet to find out if CMT can affect our elbows because now I'm having pain

there that hasn't gone away for over a week... so far from what I've read about

CMT it shouldn't affect elbows but it's the same kind of burning pain that I get

in my toe.

I don't get cramps in my legs but I do get muscle spasms in my thighs.... does

anyone else? Dr. said CMT has worked it's way to my thighs now. My son and I

are on Gabapentin at bedtime and it seems to be helping with the weird

sensations in our legs and feet so that we can get some rest.

(my name is)

[Guest guest]

Hi " Rdvan " ,

 

Elbow pain can be related to CMT.  With some types of CMT, i.e. CMT1a, the

nerves can become enlarged and painful.  On the inside of one of my arms, the

nerves are swollen and palpable on the inside of my elbow and it's painful. 

Before I knew I had CMT, the doctor wasn't sure why this was happening.  She

gave me a brace for repetitive motiion injury, but it didn't help.  After my

CMT diagnosis, it made sense and she confirmed it was enlarged nerves due to

CMT.  It causes pain, numbness and weakness from my elbow down to my fingers,

especially the pink/ring finger area.  It's just on one side for me. 

 

I have symptoms in my thighs too.  Mostly cramping after attempted

activity and muscle loss.  Hope that helps.

 

 

From: rdvan <rdvan@...>

Subject: Re:Newly Diagnosed CMT

Date: Thursday, April 8, 2010, 7:22 AM

 

Hi Jay, your post was not boring at all!! It's nice to meet you. Thank you so

much for posting..you gave me courage to post and ask questions too. I read

everyones posts every day but have only posted once I think (forgetful too lol).

I am 41 and was just diagnosed with CMT, so was my oldest daughter (21yrs) and

my son (15yrs). I said the same thing you said, there's a name for this!?! I'm

not sure knowing a name for these issues I've had my whole life relieved me

any... I didn't know my Dad has CMT until a physical therapist asked me if

anyone in our family has ever been to the dr. to have their feet looked at,

knowing that I had my Dad's feet (high arch).

I gave him a call and asked if he had ever had his feet looked at and he said

yes, I told him that the Physical therapist thinks my son and I have CMT (I had

NO idea what CMT was) and my Dad told me he was diagnosed with it in 1991 but as

a child he had tests done at a childrens hospital but they didn't call it CMT

back then they thought it was MS as well if I remember right.

I have a terrible burning in my little toe on my right foot that keeps me up at

night sometimes and that bothers me in the daytime as well, now for my little

toe on my left foot the MDA doctor said that I have broken it sometime...it' s

soooo numb that I didn't even know. When the doctor did tests on my feet I had

very little feeling and also in my hands.

Dr. said I have no grip or strength. Lately I have been trying to surf the

internet to find out if CMT can affect our elbows because now I'm having pain

there that hasn't gone away for over a week... so far from what I've read about

CMT it shouldn't affect elbows but it's the same kind of burning pain that I get

in my toe.

I don't get cramps in my legs but I do get muscle spasms in my thighs.... does

anyone else? Dr. said CMT has worked it's way to my thighs now. My son and I are

on Gabapentin at bedtime and it seems to be helping with the weird sensations in

our legs and feet so that we can get some rest.

(my name is)

[Guest guest]

Jay,

I can relate to your cramping pain. I have found that heat helps

with cramping. I have an electric heating pad as well as one of

those grain filled pillows you microwave to heat up. I use them

daily. My doctor wants me to take magnesium and calcium (as Gretchen

mentioned) and I do that. Make sure you drink enough water, also. A

warm bath or shower will help when cramps are especially bad, as it

helps the muscles to relax. Yesterday, I did rolling hills on a

treadmill and in the area where your feet attach to your legs below

your shin (front of ankle area) those muscles woke me up suddenly

with horrible pain and cramping. I had to get out of bed and walk

around to get it to stop. I never know when exercising when I am

overdoing it, as it isn't until night when I am sleeping that those

muscles will start to go crazy. Use a search engine and type in Leg

Cramps. I was amazed at all the info out on them. Hope you get some

relief.

Bonnie

[Guest guest]

Welcome Jay!

If the cramps are bad enough to disrupt your sleep and heat, etc. doesn't work,

there's Baclofin. It's used with MS patients, but a small dose at bed time has

all but eliminated my leg cramps. You might want to talk with your doctor about

Baclofin as an option.

Jim

[Guest guest]

I agree with Bonnie! It's not that I can't do it when I'm excercising and I'm

able to get lots done most days. It's just that I never know where the line is

for overdoing and that I've crossed it long ago until later when I relax and

rest. Then the muscles fasciculate and cramp and the joints ache. Interestingly,

the less muscle tone I have in my feet and lower legs, the less cramping I'm

bothered with. I paid attention to this the other day because it still twitches

like crazy. What I realized was that the muscles were TRYING to cramp but no

longer had enough strength to do it. Interesting paradox.

As to questions about hands, arms, elbows. I have had increasing symptoms in my

hands and ascending over time or how badly I've overdone it. It waxes and wanes

but always very gradually moving toward less feeling in the hands, more

parasthesias, I now can't write with a pen for long - though typing is still

pretty good. We are all different in degrees of affectedness. Even within the

same family. I think it's completely plausible that the elbow pain is CMT

related.

Another thread asked about vertigo - all of us that have CMT in my family have

some degree of vertigo. Part of the balance issue, I'm sure.

Holli

>

> Jay,

>

> I can relate to your cramping pain. I have found that heat helps

> with cramping. I have an electric heating pad as well as one of

> those grain filled pillows you microwave to heat up. I use them

> daily. My doctor wants me to take magnesium and calcium (as Gretchen

> mentioned) and I do that. Make sure you drink enough water, also. A

> warm bath or shower will help when cramps are especially bad, as it

> helps the muscles to relax. Yesterday, I did rolling hills on a

> treadmill and in the area where your feet attach to your legs below

> your shin (front of ankle area) those muscles woke me up suddenly

> with horrible pain and cramping. I had to get out of bed and walk

> around to get it to stop. I never know when exercising when I am

> overdoing it, as it isn't until night when I am sleeping that those

> muscles will start to go crazy. Use a search engine and type in Leg

> Cramps. I was amazed at all the info out on them. Hope you get some

> relief.

>

> Bonnie

>

[Guest guest]

I have the same challenge and my physical therapists would give me a quizzical

look when I said, " I don't know when enough is enough, it's only later that I

pay for overdoing it. " If only I could know in the moment!

I believe the elbow issue is probably CMT related since our joints are affected

by weaker muscles trying to hold the bones together. I have scoliosis and when

I was diagnosed they said that was not CMT related and now it is connected to

CMT- and the spine is way away from peripheral nerves

I've found that rest is just as important as exercise. When I get enough sleep,

I have more feeling in my hands and less pain. CMT is so different for

everyone. I try to take it day by day and enjoy the skills I still have. Best

wishes, Lenka

> >

> > Jay,

> >

> > I can relate to your cramping pain. I have found that heat helps

> > with cramping. I have an electric heating pad as well as one of

> > those grain filled pillows you microwave to heat up. I use them

> > daily. My doctor wants me to take magnesium and calcium (as Gretchen

> > mentioned) and I do that. Make sure you drink enough water, also. A

> > warm bath or shower will help when cramps are especially bad, as it

> > helps the muscles to relax. Yesterday, I did rolling hills on a

> > treadmill and in the area where your feet attach to your legs below

> > your shin (front of ankle area) those muscles woke me up suddenly

> > with horrible pain and cramping. I had to get out of bed and walk

> > around to get it to stop. I never know when exercising when I am

> > overdoing it, as it isn't until night when I am sleeping that those

> > muscles will start to go crazy. Use a search engine and type in Leg

> > Cramps. I was amazed at all the info out on them. Hope you get some

> > relief.

> >

> > Bonnie

> >

>

[Guest guest]

Thank you to everyone who responded! I have been on Baclofin it made me

extremely drousy. I would take it at bedtime but then even during the next day I

was so drousy I would drift off in the middle of a conversation. I've been

taking a lot of extra calcium and V-D, and the cramping has signifigantly

deminished.

I just wonder if the cramping is part of the CMT or is it something different

altogether.

>

> Welcome Jay!

>

> If the cramps are bad enough to disrupt your sleep and heat, etc. doesn't

work, there's Baclofin. It's used with MS patients, but a small dose at bed time

has all but eliminated my leg cramps. You might want to talk with your doctor

about Baclofin as an option.

>

> Jim

>