Re: welcome Francesca

[Guest guest]

Gretchen, thank you for such a quick response. Do you wear high heels? Can

you stand on your tip toes? How about your hands? What exactly were your

symptoms when you were diagnosed? They wanted me to wear a brace for my mild

drop foot but I was not comfortable with it at all and I felt it hampered my

mobility. It is a relief for me to find someone who understands about this

affliction.

Francesca

[Guest guest]

Hi Francesca,

No, I don't wear high heels, used to, but now wear shoes with about a 2 inch

heel. And yes, I can stand and walk on tip toes. No hand problems. My initial

symptoms at age 7 were falling alot on the playground and being so tired after

walking home from school. Everyone here at can understand. You might want

to find out if there is a CMT support group near you so you could meet others

and talk in person.

Gretchen

[Guest guest]

Hi Francesca,

 

Welcome to the group!  This is a wonderful source of information.

 

I'm in the Temecula area.  There are support groups in LA, San Diego, Santa

Barbara areas, and perhaps others.  If you aren't too far from a support group,

it might be valuable to meet others in person who have the disease.  What part

of southern Cal are you in?

 

I'm 46 yrs old and my symptoms are considered non-typical too.  I had to stop

working at the age of 43 due to disabling pain and fatigue, but I still don't

have foot drop, I walk rather normally, and my calves are normal size. This

actually caused my doctors to miss my diagnosis for decades.

 

With regard to heels, I used to be able to wear 2-3 inch heels when I was a

teenager, but around the age of 20 yrs old, lost the ability due to ankle

weakness.

 

The loss in your case could be due to many of CMT-related things.

 

1.  It's not uncommon for people with CMT to encounter difficulties with

regaining strength after an extended period of down-time, like you would have

experienced with the c-section.  When I was about 25 yrs old, I had a second

surgery on my knee.  The first one, when I was younger, went fine.  With the

second one, I lost 50% of the strength of the leg, which I was never able to

recover it. 

 

2.  It's also possible that the timing is just coincidental with what

was happening in your body anyway.  It may have felt sudden, but perhaps there

were several months where you gradually lost the ability but didn't notice due

to not wearing heels during several months of the pregnancy.

 

3.  Another thought is that the pregnancy and the c-section change your core

muscle structure, which could impact your walking, since the hip flexors and

lower core muscles are used in walking more in CMT patients than others.

 

4.  Or, as someone already mentioned, the stress of the pregnancy could have

taken a toll.

 

All of these things are possible and there could be other explanations as well. 

You may never know exactly what happened, but what we do know about CMT is that

it affects each person differently, even within the same family.

 

Your journey may be similiar to others, but it will be unique to you.  For some

doctors, they may view your presentation of symptoms as untypical, especially if

their only experience with the disease is what they were taught in medical

school (i.e. just the classic symptoms of footdrop and upside-down champagne

bottle legs), but as you talk more and more to people who share the disease,

you'll find that variation is the norm.

 

Looking forward to your posts to the group.

 

CMT1A