I've known about my diagnosis since 1993. I am just now, at age 54, starting to realize how impossible it feels to find help. My right foot is progressing, my orthodics hurt right now more than I can say, so I'm wearing a cast boot. I called to ask for an appointment with an MDA doctor and was told that I had to see my physician first to get a referral to see an orthopedist before i could come see them.
I have a broken pc of my Fibula getting stuck in my joint space. It swells and hurts and is made much worse with my orthodics in. (I think it has to do with the heel rise in every shoe that is motion controlling enough) .
I ask over and over for help with finding a show that will work for me. I was told by my MDA dr that I should go ahead and try "Shape-ups". I thought they were great for about 2 weeks and then I noticed the bulge and swelling and sore to the touch spot near my right ankle. Went to my doc right away, he said oh, it's just a ganglion cyst or your joint tissue has pushed out of your joint. We don't do anything about this until it gets to be the size of a small egg.
I finally got the guts to switch docs and this one, a female, agreed to give me the referral to the ortho guy, who was so attentive and wise. X-rays showed the bone chip. I have to wait 2 weeks for the MRI to be approved, so I suffer with this pain, feeling like I'm further damaging my foot, more parts are hurting because I can't wear my shoes and orthodics, I have to wear the boot and orthodics, and even then, it is such a sharp shooting pain in my upper arch area. I just about fall down with the pain.
So I am new in a job, full time, finally after almost 3 years of many low paying part time jobs. I love this job and I am trying to hide my CMT from them. I am so afraid they will find a way to let me go because of the impending cost to my new health insurance through them, which I have not sign up for yet.
This is just so hard.
I am so strong and brave and tenacious...There is no CMT doc in my area, I live in Duluth, MN.
I just signed on here to find some support and there are no support groups within 200 miles of me...none.
I tried a few other times to find online support, a group, but it seemed there was no ....exchange of good info, just lots of sadness and misery.
I am working so hard to stay able to support myself and stay in a positive mind set, finding this new adventure to be full of potential for personal growth and new experiences.
Today, right now, I struggle emotionally, and physically.
My family is not really willing to be terribly involved. Kind of but limited. Loving but...busy, with issues of their own.