Re: It will be nice to get some information!

[Guest guest]

Lenore,

Yes, you can have CMT if you have reflexes.

Secondly, what appears to be asthma, may be breathing difficulties

associated with CMT. Look in our Files for Breathing info.

~ Gretchen

[Guest guest]

Thank you, Gretchen!!! I finally found out (through the Cleveland Clinic

hospital) that I could, in fact, have reflexes and have CMT. The MDA neuro told

me no but could have been misinformed or they didn't have the information at the

time.

They still need to determine whether or not the breathing difficulties are

related but it seems more than chance that my lungs have gone downhill as my

walking has become more difficult. I

will check the files!

It has become very difficult to function when you are hospitalized so many times

and have 2 kids depending on you!! I just hope we can get some answers. It's

been a very frustrating journey so far!

Lenore

[Guest guest]

Hi Lenore, my name is Amy H. I have not been on this site long. Kinda new. I

have not met many people around my age. I am going on 35.

My husband and I have been together almost 12 years. I have three kids 14,15,and

16 years old. I live in Texas. It is hard for me living with CMT. I have had so

many problems with mine.

They have a set room in the hospital for me. I had to do my own research about

CMT. I have several doctors. They had to do research on their own about CMT. We

could not figure out why I am having so many problems.

My husband to worries about me. If you ask me he worries way too much to wear I

start feeling so guilty for having this. He is wonderful to me. My 16 year old

daughter has it to. She is doing ok though.

Sorry so long. I am just breaking the ice. I hope to continue to talk to you

about what you are going through and what you do about it and tell you more that

I have had to go through and what I have done about it. Hope to here from you.

And always remember, NEVER GIVE UP. I have been there too many times. It does

help to talk to others. I don't have that either. God Bless.

Amy H.

[Guest guest]

Hello Lenore,

I am 35 and work part time due to CMT. I went through two bad

stretches where I had a lot of stress and was overworking and pushing

myself and both times my body let me know when enough was enough.

The first time around 30 years old, I developed allegies and asthma.

I was in the emergency room a couple of times. I was very sensitive

to allergins and certain foods.

By cutting back on my stress and getting more rest, I was able to

manage the reactions over time and now I don't take any medication

(for awhile I was carrying an epipen for the food allergies). I do

get a little tight breathing around dust but nothing like before.

The second time my body put on the brakes, I was teaching with a 2

year old at home and I started contending with weakness in legs and

hands, numbness, pain through my hips, chronic fatigue, and more. I

was lucky enough to shift to part time work and with rest and non-

impact exercise and pacing my day, I have regained a lot of muscle

tone and abilities that seemed lost during that time. I still manage my

adaptations daily, but I see how my lifestyle affects my health.

When there is tension at home- anxiety about " what's next " or so

forth, or stress at work, I am far more prone to trips, bumping into

things, accidents, injuries, and other health issues. It's like my

body is my barometer to slow down and when I don't pay attention it

gets a lot noiser (more painful).

It definitely isn't an easy road and you have a lot on your plate,

but know that it isn't all downhill and perhaps some short term

changes can help you feel better. For awhile we buckled down and

hired a friend to help clean the house. Things that give you

downtime to rest and lighten the stress.

I wish you well and hope that you feel better soon!

Take care,

Lenka

[Guest guest]

Hi Lenore!

It is so important for us to finally have found people who really

understand our struggles. To admit to someone else that we find life

hard sometimes and share our experiences, really do make a difference.

I - like most people have up-and-down days, but the extreme tiredness

is with me on the best of days. On good days, I do manage to remember to be

grateful for all the good things I have in life, to pray and to be there for

others (even if it's just a phone call or invite somebody for a coffee). I'm

very lucky to have a kind, loving and supportive husband....He jokes that he

" married me in sickness and in sickness " )

My worst enemy is myself, because I can sometimes beat myself up, making myself

feel guilty for not doing all the things around the house- and look after him,

because I'm just to tired to do

anything. Then my self pity sets in and the day is ruined, unless I

manage to change my thinking.

I'm just emerging from a " downer " now, because the CMT has progressed this year

and I find it almost impossible to walk at all, even with braces and a crutch. I

know that what helped me most this time, was telling my husband and all my

friends how I REALY felt, my fears, frustrations and how VERY tired I am. (They

know now and I don't need to say it again).

I often fight against " giving in " until things are so painful, that I must

change what I can; so I've ordered a " booster-couchion " to get up from the sofa,

a new appoinment at the orthoctics - to hopefully get useable leg-braces, I will

buy a light weight wheel chair to use on holidays and so on.

It must be difficult if your husband doesn't understand how tired you feel and

with kids, I can understand that you find it difficult to cope.

I have " be good to myself days " with lots of rest, reading and peace. And I'm

lucky to have found a good cleaner every

week. I'm praying for acceptance of my illness.....and (a little

belated) I go for all the help I can get!

I wish you all the best. Please try not to beat yourself up or feel

guilty. We are " good enough " . )

Nina (45yrs)