Re: hip weakness

[Guest guest]

Jackie,

For about the past two years I have had trouble with my right hip. It pops

and feels like it will pop right out of place. I was diagnosed with arthritis

in my hips and put on Vioxx first then Celebrex. I stopped taking the Vioxx

because it effected my breathing and the Celebrex just scared because of the

Vioxx relation. So now I take ibuprofin and deal with the popping. My

orthopedic doctor told me I would probably need hip replacement within 10 years.

I was

shocked as I'm only 39 years old. I don't know if this could be CMT related

but I'm going to ask my neuologist next week.

Elaina/NY

[Guest guest]

Jackie,

My sister had bones in both of her feet fused when she was 16 and 17. This

was done by a highly recomended surgeon of the times and one that was well know

for this procedure on CMT. She is now 56 and having propblems with her hips.

She has been told that the hip bones are rotating in the socket. She has her

good days along with her bad days, but keeps moving. Moving is what keeps her

going. Nothing else will solve it at this point.

Elaine

[Guest guest]

Jackie,

I have CMT and I have pain and sometimes my hip feels like it pops out of it's

place. I Had an MRI and it showed inflammation but I read that you can get hip

pain with CMT because of the way you walk.

Tommy

[Guest guest]

I too have hip weakness, however mine is a left over affect from something

called perthes disease. I had problems all my life and perthes disease was the

only thing they diagnosed until I was in my forties and then they finally

found CMT too. It is just a thought.

[Guest guest]

Hi Jackie and Elaina. I have the hip popping also. My Chiropracter is the only

one to help me, besides pain pills and heat pads. Mine happened from a fall I

had in '89. Having CMT doesn't help. Good Luck to both of you.

Debbie

[Guest guest]

Hi,

I feel the same. My Dr. doesn’t want to do genetic testing for me. I don’t know

yet if I have CMT or SMA and what's the difference. I feel worse with my back.

Happy Passover.

[Guest guest]

Hi Jackie:

My son Gavin has 1A (confirmed DNA test) and has hip weakness, particularly on

one side. His toddler room daycare teacher noticed that before any other early

symptoms.

Good luck!

Sally

[Guest guest]

I don't have any hip popping. My walk was evaluated and they say that I walk

swinging my hips which leads them to believe that my hips are affected.

The good news is that I just found out that National Institute of Health (NIH)

will be possibly be accepting me into their research study called " clinical and

molecular manifestations of inherited neurological disorders " . They are going to

do some further testing to try to identify what I may have and to try to gain

insight into the precise gene that is associated with me.

I will keep you all posted in what I find out when I am there.

Jackie

[Guest guest]

Hello people,

I believe I missed parts of the conversation, however I must add my

experience or should I say my son's. He had two surgeries for both his hips at

age 3 1/2 and age 9 on his right hip. He was at risk for dislocating hips. He is

now 16 and is doing fine ***cross our fingers*** I believe this has something to

do with CMT.

Thanks,

Heidi

[Guest guest]

what is perthes disease?

Thanks

Heidi

[Guest guest]

I had Perthes disease as my doctor called back then and I also have CMT. So

it is a double complication for my hip. I just learn that since I walk

lopsided my chiropractor can keep my in line which reduces the stress on the

weak

hip and reduces the pain there. I live by the motto keep smiling it makes

people wonder what you have been up too. then I keep on going and going and

going.

Cathleen in Arkansas

[Guest guest]

Heidi,

I believe you are speaking of Legge-Calves-Perthes disease. Yes, another of

those like Charcot-Marie-Tooth, named after three doctors! I should note that

the accent is on the " ves " in calves.

This has to do with the hip socket not forming correctly in early life, if not

corrected before growth is stopped a permanent malformation will

persist. This is more common in boys, although I know one female person who had

it. Also a friend's son had it. That's about all I know, but at least you can

look it up now.

Jim Nash in Ohio

[Guest guest]

Cathleen, You're So Funny!! My Chiropractor does the same for me too.

Debbie in MO

[Guest guest]

Hi Jim,

Actually no, that is not what my son has. He has coxa valga. He had his

hips corrected, now everything is fine.

Well thank you,

Heidi