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Re: My MC Story

Pete,
I read you comments with such a caring heart. Sadly, most of the people with Myotonia Congentia, Thomsen's or Becker's have to go through HELL before a doctor will listen to them. Then the testing is HELL. Parents know something is not right, the kids know something is not right..but the medical profession is clueless. Luckily, we have advocates like Jan who has spent her life thinking about us....and our plights.

I know, I owe Jan so much for her support, kindness,caring approach and for making sure doctor's are in the know.

I wish you the best...living with Myotonia stinks.

Re: My MC Story

I am beginning to realise that in one sense I have been lucky and that is in being referred to a neurologist at an early age. I had lots of tests done too, most of which I can’t remember now, for which I should probably be thankful, but in retrospect I get the feeling that the doctors responsible were none too sympathetic towards me and that this has given rise to my dislike of being in a hospital, which is ironic considering how much of my life has been spent in there!

The ignorance surrounding MC within the medical fraternity is disturbing, I often find myself lecturing them as to what it is all about, especially if I go in for something not connected with MC. I have frequently been amazed at how few doctors bother to acquaint themselves with a patient’s condition before proceeding with a form of medical care that may be affected by or have an effect upon MC. In fact it can be a bit worrisome.

Living with MC can be difficult, especially if you have the more severe symptoms, and the general ignorance does not help, but I have lived with it and done many memorable things in my life and achieved things of which I am very proud. I have done this despite the MC, not because of it, and I would encourage everyone who has MC to take a similar approach in their lives because we only get one chance and there’s much of this world that is actually quite beautiful.

Re: Re: My MC Story

Pete just read your story,my mother was born with spina bifida ,she also had mc, she had one leg amputated just below the knee,when she was 9 years old and the other when she was 19 ,so thats the only way i knew her,she had much more mobility without her feet, which were very deformed. She of course understood well the difficulties i had but it was also put into perspective compared with the difficulties she had.

Type of Myotonia: MSN Messenger

Re: My MC Story

Barbara, thanks for the reply.

I was due to have my left leg amputated last year but the surgeon advised against it as at that time there was some confusion as to what was causing the deformity in my feet, it was explained as 'a muscular imbalance with an unidentified location' but late last year confirmed as Spina Bifida Occulta, which had originally been diagnosed when I was a child. The surgeon was concerned that whatever was casuing my feet to become deformed might attack what was left of my leg!

I'm glad to hear that your mother managed to get on with her life after the surgery.

Re: Re: My MC Story

Goodness me yes she had 3 children and 7 grandchildren, i often wonder at the courage her parents had ,for it was 1926 when she had her first op, i can only guess at the motality rate for that kind of surgery that long ago.mind you gangrene had set in so i suppose they had little choise, does the spina bifida cause you much pain?

Type of Myotonia: MSN Messenger

Re: My MC Story

Wow, that is impressive! I also agree that her parents showed courage too.

Yes, my feet are quite badly deformed which limits the amount of walking I can do as the pain increases due to me passing my body weight through a very small area of each foot. This effects my stance and gait which in turn effects my upper leg muscles and my lower back. Add to that struggling with the MC and the whole business of walking or even just standing still for awhile becomes both uncomfortable and tiring.

My orthopaedic surgeon wants to operate on my right foot, which is the least effected, using an Illizarov frame but I'm not convinced as the cause of the progressive deformity is still active. I had reconstructive surgery on my left foot but it barely lasted 2 years before the deformity presented itself again; this is why we considered amputation last year.

Up unitl now I had not heard of another case of MC and Spina Bifida in one person, certainly my doctors thought I was unique in that respect, not that I'm complaining; I'd rather not have either condition!!

Re: My MC Story

Are you fro m England Pete? By the way i like this new format or whatever you would call it Jan,and the new smilies sorry i didnt know he was angry,and now i cant get rid of him..

Type of Myotonia: MSN Messenger

Country: http://

Re: My MC Story

I wasn't aware the format was changing, but I like it, too. You can just look at new messages to catch up and I think the search engine is much more comprehensive.

Jan

Country: http://

Re: My MC Story

barbara lewis
Are you fro m England Pete? By the way i like this new format or whatever you would call it Jan,and the new smilies sorry i didnt know he was angry,and now i cant get rid of him..


Yes, I live in England Barbara.

P.S. I like this format too!

Re: My MC Story

Hi Pete,
Don't see a whimp you in what you have gone through, and what have I experienced doesn,t make me more courageous then anyone else.
It is just part of my process.
I do feel I must have a sign that says HIT ME some where on me, wish people would not take it so literal.
We both have better days and our bad days, it is what we do with our experiences that counts. You deffinite have done wonders Rosa
PS Like that guy you mention going to look him up.