Re: Swan Neck Fingers

[Guest guest]

Hi , It mean his fingers are starting to show CMT. The vitamin C that

I take has made my left hand fingers strighten back out. My left hand I am

still waiting for a change in my pinky finger. The rest are better. 10K

miligrams a day of vitamin C. I take 5 at am 5 at pm. All time release now. Wow

I feel

stronger.

[Guest guest]

In a message dated 8/12/2004 11:14:53 AM Pacific Daylight Time,

MommyToAdam@... writes:

> I take has made my left hand fingers strighten back out.

Opps ment my right hand.

[Guest guest]

Thank you Gretchen, I appreciate your input. It was just hard to here at the

end of the day yesterday our son show his emotion by saying he was

disappointed with the news. He thought it came later in life since all our drs

visits to

this point had said his hands look great with no signs and plenty of strenth.

He loves to build model cars so I am sure he is very concerned.

Thanks again

[Guest guest]

Thanks , I had started him with Vit. C. and then he kind of stopped

taking it, didnt see any changes. So I will encourage him to give it another

try.

Thankyou

[Guest guest]

Thank you, it just occured to me that two of my husbands cousins have

Rheumatoid Arthritis. I will talke with them

Thank you

[Guest guest]

Hi ,

Have to admit, I have never heard the term of Swan Neck Fingers and it

seems so rude with PTs and docs refer to our bodies like that. CMT can

affect the hands and fingers, yes to that. At any time. Some people are

more affected in their hands that others, and some not at all.

I've lived with CMT since diagnosis at age 10. I had some hand

contractures when I was about your son's age, and I had PT on them, plus

learned some exercises with a tennis ball and also exercises and

hand/finger stretches to do in water (either pool or bathtub). Perhaps

your PT can help with this.

I know that knife/fork thing well. Being a teenager and having someone

cut my food up was horrible! The contractures went away and to this day

I am not affected in my hands, except for tremors, which are controlled

by medication. If your son's hands shake, maybe go to the neurologist

and see if a medication would help with that.

No one can predict the course of anyone's CMT or the areas that will be

affected. I have to tell you, I am in better shape now at 52 than I was

at 14. No hand problems, I cut my own food, I also paint and stencil and

play the piano, etc. use my hands alot without problems.

Gretchen

[Guest guest]

I feel for your son since I still love building models, though I

rarely have time for it. A few observations:

1. My son showed what appeared to be the beginning of a swan neck

finger last fall but it improved on its own. I can't speak to your

son's condition but Gretchen's experience also seems to offer some

hope.

2. There's a device commonly used by hobbyists called a " third

hand " which has two or more clamps and sometimes a magnifying

glass. It's used to hold small parts while constructing a model.

There's one listed on ebay now. It may help him continue the model

building.

3. I have no experience with them, but there are finger splints

available to deal with swan neck fingers. I found the following

websites: http://fingersplint.orthobionics.net and digisplint.com

They may be useful. Maybe your son's physical therapist can

evaluate them. Perhaps others in this group have experience they

could share.

Bob

[Guest guest]

Hi, Bob and Group...

Just wondering - what are swan neck fingers??? Is that where you are double

jointed and can bend the fingers backwards - and is that a symptom of CMT. I do

not have double jointed fingers as a symptom but my daughter was diagnosed with

CMT and I can remember her doing that with her fingers as a young girl.

June *** June, look back a few days, or maybe last week in the posts on Swan

Neck Fingers. A charactertistic of Rhumatoid Arthritis. ~ Gretchen