Muscle Spasms

Does anybody know if the muscle spasms associated with IP can be a long term condition? I have extremely tight calf muscles and my achilles tendon is tight that it's causing havok on my feet. Is this something a neurologist should be looking at?

[MarysMom61]

My daughter has IP and will be thirty years old this year. She had a lot of trouble with her legs. She could not walk until she was ten years old. Her problem was that the hamstrings in her legs weren't growing so she could not put her feet flat on the floor. They put her in braces for over six years (not a good Dr.), I didn't know any better. I finally took her to another doctor who did surgery on her legs and lengthened the ham strings and then put her in a different kind of brace. She later had to have surgery again on both feet because she was extremely flat footed and her feet were turning inward and causing hip problems, so they went in and broke some of the bones and built arches in her feet and helped her to get her feet straight out in front of her. She still has a lot of trouble but she is able to walk, but she falls a lot. I don't know if this helps you but perhaps you should be seen by a doctor like an orthopedic. Or perhaps a doctor who specializes in sports medicine??

[IPIFSE]

I am not familiar with the problem of muscle spasms, however on the last weekend of August I'm going to France to spend time with a gathering of French families which are the French IP support group.  Several of the researchers from Paris will be there and I will ask them this question.  I return September 2 and will be in touch.

Best,


Susanne Emmerich
Founder and Executive Director
Incontinentia Pigmenti International Foundation
30 East 72nd Street
Suite 16
New York, NY 10021 U.S.A.
Tel: [phone]
Fax: [phone]
Email: ***@****
web site:  http://www.ipif.org

[appleblossom7]

My little one sees a physical Therapist for that same reason. It may be a tight heel cord. They have a stretching brace she needs to wear 4 hours a day, at night, to stretch her heel out. They were saying that way it promotes muscle growth. Her calf muscles were extremely tight feeling and she could barely pull her left foot up more than 2 inches. With all of her stretching they have moved her to once a month instead of once a week visits. I am excited. Be encouraged, I would get yourself to a p.therapist. Have an evaluation, get some leg excercises, start stetching out your leg. Potassium is good for cramps by the way. Bananas. By the way, I am so sorry, you must be in a lot of pain. I hope my suggestions work for you.

Katie and Amaris(4 yr. old)