Thank you so much everyone

[Guest guest]

What a wonderful group of people you are!

I really had not expected such warm and caring responses (it took three days

to actually summon the courage to post that email). I will have to take a

little time to read all the responses and digest what you had to say. There

was so much wisdom and good advice in them.

I had no idea that so many would identify with the fatigue issue. how

do you cope with small children too. I find an hour with my (6)

grandchildren wears me out! I admire you.

It sounds like many of you have run up against the same problems with

multiple illnesses too. Thanks Gretchen for the welcome and the input. Are

there really over 400 on this list, or did I misread a few zeros?

Yes Becky, I have been diagnosed with FMS as well as CFS, but I have to

admit that the spinal arthritis from the Crohn's was the worst, and that is

really so much better since I have been on Prednisolone. The FMS pain seems

to have settled as well, unless I try to do too much. I hope your health is

improving too.

I will write to who said I may contact her personally. Thank you for

that offer. We can exchange lovely long emails and not bore everyone else to

death in the process ;-)))

Lamar, I too was a registered nurse, and I still feel so let down that I can

no long follow the career I love. I retired at the same age as you after 25

years of active nursing. To answer your question, I am the first in my

family to be diagnosed. Mum has really bad neuropathy and clawed feet which

means she has to wear shoes which are specially made. She finds it hard to

walk, but she believes that her problem is caused by diabetes and I can't

convince her that she has other problems too. She did ask her GP about it

when I was diagnosed, but he told her she was too old (82) to develop it,

and totally disregarded the fact that she has had problems for a good part

of her life. One daughter has at this moment, a black and blue ankle from a

bad sprain on the weekend, and the other has arches so high she has trouble

walking. We always knew we were different, but it is only since this

diagnosis that the muddy waters are becoming less muddy. I was always

uncoordinated- couldn't run to save my life, and I have fallen over in major

streets in all capital cities except Darwin. and Canberra (give me time).

It is only in the last 10 years though, that I have noticed weakness ( and

yeeesss now you mention it, the fatigue got so much worse at that time!!),

and the last 3 that I have started to lose sensation as well. I have

shoulder and leg muscle atrophy, but this was put down to de-conditioning

because of the CFS. It was only when my reflexes began to be affected that

I felt empowered enough to ask for a referral to the neurologist, and he

basically diagnosed me from the door- high stepping gait, high arches, you

know the picture. I too use a walking stick and have an electric scooter to

get around if I need to walk more than short distances (100 metre max).

I had my first hydrotherapy session (I got the idea from discussion by this

group) today and I am exhausted. It certainly became obvious how badly my

legs were affected when I tried to move in water. This has convinced me I

need to go back to the neurologist.

Once again thank you for your responses. It has helped more than you can

imagine. Sorry, I didn't keep my promise and send a shorter email. I'll try

next time.

With best wishes from

Selina

[Guest guest]

Selina,

Lamar here,

As you know, nursing is a lot more than " giving baths, pills, and shots. " A

big role of a nurse is support and education. I am by no means an expert on

CMT or anything else, but I do have a good and varied medical background.

Needless to say, since I grew up with CMT in my family (I have at least 18

cousins diagnosed with it at the present) I have studied everything I could

find on CMT. Still, a large part of what I have learned has been from this

and other lists. Just remember, If we can help another person we are still

doing the profession we love. A lot more topics than CMT come up on this

list, even though they relate to CMT. Medication, pain, arthritis, sleep,

nutrition, sexuality, and depression are only some of the things that come

up on this list. It is a great opportunity for you to continue, in some

ways, to help others, and at the same time you will learn and find support.

As to your mother, I fully understand your position. My grandmother was

never officially diagnosed. In fact my mother was the first in my family to

have the Dx named. But my grandmother had all the symptoms, and had 2

children diagnosed, as well as her sister, and her brother having children

with the Dx. At her age, any extensive testing would have been senseless.

CMT progresses very individually. Even identical twins with the same

genetic makeup differ in progression. Some are never officially diagnosed

and go through life with " funny feet " and weak ankles. I even know of one

person that did not show marked symptoms until she was in her 70's and was

then diagnosed. CMT is the most common neuromuscular disease in the world,

but is often mis-diagnosed or overlooked for years. It does not get the

publicity that other neuromuscular diseases such as MD does. Each of us can

have a part in changing that.

You are probably aware that MDA in Australia helps with CMT

http://www.mda.org.au/noframes.html

..and that Australia has a CMT organization

http://www.ultranet.com/~smith/CMTAA.html#3 and

http://www.ultranet.com/~smith/CMTAA.html . I do not know all they offer,

but they could be a resource in your area.

You live in a country I have always wanted to visit. Being very interested

in anthropology, the aboriginal people fascinate me. As a matter of fact,

in the early 70's I came close to relocating there. I have a beautiful oil

landscape hanging in my home that I was lucky enough to get cheap, by a well

known Australian artist ( Barron). That seems as close as I will

get!!

You mentioned hydrotherapy. That is considered to be one of the best things

for us. The exercise in water is great. Unfortunately, there is no

facility near me that offers it.

----- Original Message -----

From: K & S

Sent: Friday, July 20, 2001 02:29 AM

Subject: [] Thank you so much everyone

What a wonderful group of people you are!

I really had not expected such warm and caring responses (it took three

days

to actually summon the courage to post that email). I will have to take a

little time to read all the responses and digest what you had to say.

There

was so much wisdom and good advice in them.

I had no idea that so many would identify with the fatigue issue.

how

do you cope with small children too. I find an hour with my (6)

grandchildren wears me out! I admire you.

It sounds like many of you have run up against the same problems with

multiple illnesses too. Thanks Gretchen for the welcome and the input.

Are

there really over 400 on this list, or did I misread a few zeros?

Yes Becky, I have been diagnosed with FMS as well as CFS, but I have to

admit that the spinal arthritis from the Crohn's was the worst, and that

is

really so much better since I have been on Prednisolone. The FMS pain

seems

to have settled as well, unless I try to do too much. I hope your health

is

improving too.

I will write to who said I may contact her personally. Thank you for

that offer. We can exchange lovely long emails and not bore everyone else

to

death in the process ;-)))

Lamar, I too was a registered nurse, and I still feel so let down that I

can

no long follow the career I love. I retired at the same age as you after

25

years of active nursing. To answer your question, I am the first in my

family to be diagnosed. Mum has really bad neuropathy and clawed feet

which

means she has to wear shoes which are specially made. She finds it hard to

walk, but she believes that her problem is caused by diabetes and I can't

convince her that she has other problems too. She did ask her GP about it

when I was diagnosed, but he told her she was too old (82) to develop it,

and totally disregarded the fact that she has had problems for a good part

of her life. One daughter has at this moment, a black and blue ankle from

a

bad sprain on the weekend, and the other has arches so high she has

trouble

walking. We always knew we were different, but it is only since this

diagnosis that the muddy waters are becoming less muddy. I was always

uncoordinated- couldn't run to save my life, and I have fallen over in

major

streets in all capital cities except Darwin. and Canberra (give me time).

It is only in the last 10 years though, that I have noticed weakness ( and

yeeesss now you mention it, the fatigue got so much worse at that time!!),

and the last 3 that I have started to lose sensation as well. I have

shoulder and leg muscle atrophy, but this was put down to de-conditioning

because of the CFS. It was only when my reflexes began to be affected

that

I felt empowered enough to ask for a referral to the neurologist, and he

basically diagnosed me from the door- high stepping gait, high arches, you

know the picture. I too use a walking stick and have an electric scooter

to

get around if I need to walk more than short distances (100 metre max).

I had my first hydrotherapy session (I got the idea from discussion by

this

group) today and I am exhausted. It certainly became obvious how badly my

legs were affected when I tried to move in water. This has convinced me I

need to go back to the neurologist.

Once again thank you for your responses. It has helped more than you can

imagine. Sorry, I didn't keep my promise and send a shorter email. I'll

try

next time.

With best wishes from

Selina