I've "trolled" many of the topics and discussions here and have already found more info and help than many other areas I've explored...this is the place for me :-)
I'm a 38 year old new father last year, I am currently undergoing CMT diagnoses and care. Pending genetic tests, all arrows point to CMT. My mother was diagnosed approx 15 years ago and looking back I have all the typical lower extremities signs. Growing up I was clumsy, spraining ankles and ran like a newborn giraffe. All of the struggles I had growing up were just passed over (like many others here did) and blamed on just being the clumsy kid.
My current story actually starts in February of this year. Never having any symptoms that prevented me from working, I have worked all my life. Engineer/mechanic by trade. This past February I sustained an injury to my left elbow. It was a partial tear of the long bicep muscle which later became diagnosed as Lateral Epicondylitis (tennis elbow) as well as Ulner Neuropathy. I'm left hand dominant and this injury has not healed well at all. During the month of April I started having severe cramping in the left forearm and hand and within days it migrated to my right as well. My physical therapist witnessed an "event" where my arm and hand swelled and tremors started. She turned me on to finding out what is really happening because this obviously is more than an elbow injury. My conditions have gotten drastically worse and I am in good care from my doctors and have regular scheduled PT sessions which seem to help a bit.
Along with the fear of passing it along to my one year old son (who's pediatrician knows all the info I have so far) I'm very troubled by the extreme progression this has had these past few months. My feet and calves are worse than they ever have been and my hands and forearms are following the same path. Has anyone experienced an injury "triggering" CMT in other areas? I never had ANY problems with my hands until now :-( I never knew I even had CMT until my doctor started looking at the big picture during my elbow injury.
My elbow injury was during work and is an open worker's compensation case. I have chosen for now to explore my CMT symptoms on my own. Typically with WC/Large Corporate Employer, I am guilty until proven innocent. My elbow itself has been cleared for "one arm only" return to work status BUT, my primary care Dr has released me from ALL work due to CMT and getting a handle on it. I have kept my CMT progress private from my employer until I have a firm diagnoses, but my complaints I have told them (cramps, pain, loss of motor skills in both hands, feet and calves aren't working etc..) have been referred to as "silly" and "you expect us to believe this" by my supervisors. So, knowing I'm behind the 8 ball and my employer doesn't understand or believe my complaints, I have kept it quiet until I can present an actual written diagnoses.
So there's my story! Like I asked earlier, anyone have an incident to ignite these severe symptoms? My doctor has also talked with me about my elbow possibly triggering the CMT in my arms and the elbow was in fact a work related injury. That work related injury may have triggered this "sleeping dragon" inside me and that in itself is a legal matter involving worker's compensation. There's many days that I am almost completely disabled with pain and cramps. I've always been able to get on my feet, but never with the pain I have now. My hands have shut down to the point my wife fills out paperwork (and typed this) for me. It's hard to stay positive, especially wanting to be an active father for my son...but he himself is my number one driving force to keep going.
Thank you for reading and thank you for the forum...it has helped tremendously already.
Hi D's Dad. l do believe that a car accident has progressed my symptoms! l injured my foot immediately in the accident and now my right foot issues are worse than they ever have been. Since the accident l have had 3 surgeries on major joints. ln process now to get my genetic results to see what type of CMT l have. The neuro even indicated that if it does not come back CMT that l will have to have a spinal tap to see what is wrong with me. The spinal tap really freaks me out.
Ive had many surgeries and believe i have had cmt since i was young im 58 now,and i was resigned to the fact being clumsie was my lament. I have had the symptoms of' 'electrical shock" symptoms when i injured my feetThey were very painful and troublesome.You are a good Dad in that your son comes before you ,but hang in there things will improve.Gabepentinis a life saver for me. I once experienced so many 'shocks'for so long i grimacedso hard i broke some teeth. Anyhow take it easy and you have everything to look forward to....your not alone.
Sounds very familiar and seeminglyy, CMT came on me over night as was putting in 14 hr days and working physically at times and really overr achiever my whole lfe. But, when I summed it up it was an onset mainly due to walking into a brick wall with the back of head (neck turned) ; which I now know as proproception due to CMT. (Not knowing or sensing where your body is in the space around you) ,things esculated to put me down, severe sciatic and leg pain; no balance at that point and using cane, forearm crutches and then leg braces and wheelchair; it triggered me finding out, about CMT, and then it explained lots of issues while growing up. Not being able to ride a bike, not roller skating, always tripping on my own feet. Lots of hand issues which in early adulthood , suspected I might have developed Arthritis and or carpul tunnel from all the hard physical things I'd done with hands.
It sounds like you are on to the culprit, and is so much better to know than not know. If I had known I might not have done some things that has caused irriversible damages. Glad you found us, as we can sure relate and hoefully give you encouragement and support!
Thank you for sharing your stories and support so far, it does nothing but help knowing others know how you feel. My family and friends don't understand and quite honestly, I'm glad they don't know what CMT is like!
My doctor is very clear on trying to keep doing things to stay happy and positive. Washing my old truck even if it takes all day...go slow and rest, but never give up on my life and hobbies. Some days are better than others, and i tackle each as they come.
It's very similar to your story CM. My last job description was VERY abusive to my hands and arms, more than anything I have ever done. I work in a fast paced manufacturing facility and the procedures we performed required us to literally use our hands as hammers. The stress the job put on us resulted in so many sprained wrists, carpal tunnel etc...with co-workers, as well as my elbow injury. Everything about the task was unhealthy for our arms and hands. Knowing what I know now...I'll never get back the damage I did trying to be a good and fast employee. I'm paying the price now.
I meet with a neurologist in July. Along with all my questions, I'm hoping for answers. Everyone so far has agreed this injury may be the trigger but their words mean nothing towards my case not being specialists in this field. I have my fingers crossed for answers and help.
I've prayed that I can at least get control of this, right now it seems things are happening so fast that I can't keep up. If it will just "level off" I think I'll be able to adapt many aspects of my life. But first and foremost...I pray my boy doesn't get it. He looks and acts just like me, and I've told his mother that it's her job to cover the rest, I did the looks and personality :-) Maybe her genetics will bail me out :-)
Depending on the type of CMT you have, it is very possible you did not pass it to your son. Hope you get your results soon so you will know more about what you may be up against.
It's not uncommon for an injury or accident, surgery or stress to one's emotions or illness to trigger CMT to rare itself to become known. I was 40 yrs old before I knew or had any idea I had a serious disease I was born with. But, after becoming aware, I could trace signs all the way back to birth. Always minor enough to explain away.
It is hard when you have been seemingly strong, capable and driven your whole life, to have something unknown to suddenly halt you in your tracks in comparison. But, I had two young children (ages 2 and 4 yrs), and a granddaughter (infant) who depended on my care daily so it kept me motivated to find ways to stay able.
18 yrs later, I'm not any better, but I've sure learned to manage better. Good news is, I'm not permanently in a wheelchair and a basic invalid, as the doctors at Mayo in Rochester had projected for me within 8 months of diagnosis. I have continued to adapt to my limits and find new things I CAN do or different ways of doing things, though a challenge, of things I once did easily.
Stay close to that little one as they are best medicine for depression. I care for my youngest granddaughter daily and she is the sunshine in our days!