Hi,

I just signed onto this forum after being booted from another one by a pretty nasty moderator. No second chances for a minor mistake on that forum I can tell you! I have already been told that this is a much better place to be anyway.

I was wondering if anyone here suffers from MD? I am looking to connect with people that have similar difficulties as I do.

I look forward to learning about everyone here regardless of their issue.

Hey Madalot,

I dont have MD but am having nueromuscular issues. I am from teh TOS board. Was just cruising by and wanted to say hello.

Look forward to talking to ya

Hi Shelley --

It's nice to meet you. I'm sorry you're having these issues. Are they trying to figure out what's going on with you?

I spent many years and had a lot of testing done before it was determined I have MD. It's pretty rare to find adults suffering from this as it's more common to see children with the disease. But, there are some forms of MD that don't surface until mid to late adulthood. Based on my history, I have most likely had this since birth, but it was mild enough during my childhood to go unnoticed (I was just considered the weakling kid). Unfortunately, I'm in my mid 40's now and the disease is progressing pretty badly. I'm in the process of trying to get a power wheelchair as I am having so much trouble walking. Luckily, I have a great family with a lot of support so that helps me.

I look forward to talking with you as well.

I have myopathy, which is a lessor form of the MD that my son had, he had Duchenne type, other relatives had Limb Girdle, and Becker's. When you are a carrier as I was, sometimes at a later age, (I am 69) this does show up in the mother but in a lessor form. Anyway, am pretty familiar with MD, my son lived to the age of 37, dx'd at age 6, wasn't supposed to live that long, but he did, and good for him!

Celia

I was just skimming by and wanted to wish you the best.

(I don't have MD, I think, but who knows. After 7 years I was given a dx of parkinsonism, and it was taken away a month ago. Sx have worsened and are pointing towards another dx that is close - Wilson's Disease.)

I am very sorry about your son. No matter what the age, it is too young. I know that it must have been a struggle every day for you and for him. I have also lost a child, but due to an accident.

Take care, and I hope that you find some answers...or at least a friend.

mama

I am a film with muscular dystrophy. I have been fortunate to make it to 30 years old and keep on going.

I am on disability because of mitochondrial myopathy, which is one of the Muscular Dystrophy Association (MDA) conditions.

I was diagnosed in 1997, when I was in my late 40s, but had been having health problems for some time.

Kathy

Hi Madalot,

I dont usually post much since I am so busy with my business's I run. I have MD Myself and have had it since Birth. Mine is know as Charcot-Marie-Tooth. I myself have been in and out of my wheel chair a couple different time as mine progress as I got older. I will be in my mid 40's in a few months, and I seem to notice small changes in my strength each year. some better and some a worse. I have been doing alot of research on homepathic remodies to help instead of the conventional drugging doctors seems to push upon us. I keep very active all year round, with my first business freelance photography and throughout the year with car shows( my truck in them and shooting them) local events doing most allmost all of my own home remodeling. Some told me I would be in a chair by the time I was in my mid 20's and I was even told my schoaliosis(spelling?) would compound that. I told them I was to stubborn for that LOL. Now I have had disability councilers wanting to have me lecture on disabilities and their effects and the positive thinking approach.
So what I am saying in short is look for other alternatives to your well being.
Take care

Peace Out

I have a neuropathy and a myopathy, both likely related, likely hereditary, likely autosomal dominant and adult onset. My myopathy is non-specific, which means, as far as I know, it doesn't fit into any specific myopathic disease and is likely caused by my neuropathy...but from what I understand the analysis isn't complete. I mostly post on the PN forum, because I have a small fiber neuropathy pretty much everywhere that small fibers live. (And they do dwell every where).

I did the research that was needed to get myself a muscle biopsy and learned a heck of a lot about hereditary myopathies along the way (including an exhaustive genealogy that indicated I came from a line of folks that pass on some obscure autosomal dominant myopathy that comes with a small fiber neuropathy)....and I found the end of the internet. Anyway, hello.

I have Charcot-Marie-Tooth disease (CMT). There are a number of types and sub-types of it that have been identified. CMT is one of the 40 diseases covered by the MDA. But, unlike Muscular Dystrophy, in which the defect is in the muscles, CMT is the most common inherited neurological disorder and the defect is in the nerves that control the muscles. We are born with healthy muscles. CMT is primarily a disease of the peripheral nerves (the connecting lines between the brain and muscle). This is outside the spinal cord - PNS not the CNS. Signals can't get to and from the brain to muscle and skin and other things. The muscles atrophy because of this. Most forms of CMT have that 50/50% chance of passing it on to each child.

Muscular Dystrophy is a disease directly of the muscle itself and thus causes weakness of varying degrees (there are many forms of MD. Obviously, people who have MD know this.

I can trace CMT back to my great, great grandmother. This is on my Mom's side. It was never hid from me and I was aware of it from an early age having seen it in my grandfather, my Mom, and her brother. CMT can and does vary greatly in severity, even within the same family. My symptoms did not appear until later in life, my Mom was in her late 30's, her father in his 60's and her brother when he was 10. Symptoms can come on when you are young, old, or in-between or they can be so mild that you do not know that you even have CMT but you can pass it on. No one, not even a doctor can predict how you will end up. CMT is complicated and they are finding more information all of the time. There is DNA blood testing for about 10 types now. There are 33 genes they have discovered for CMT and 44 not discovered. The first DNA blood testing was in 1993. There is much research going on that people aren't aware of. Much has been done and found in the past 12-15 years. CMT was first discovered in 1886 and named for the three doctors Jean-Martin Charcot, Pierre Marie, and Howard Henry Tooth. By the way, Charcot also discovered ALS and had to do with Parkinson's and other diseases.

Just thought I would share.

Kitt