February 3, 2019 at 7:58 am #175146Have I got CMT?
until a couple of days ago I knew very little about MD and I especially had never heard of Charcot Marie Tooth until I was looking up excercises for ankle dorsiflexion and Pes cavus feet and a whole new world opened up when I kept seeing that tight ankles was common in people with CMT out of curiosity I thought what’s that read the sypmtons and I probably tick every one of them.
However I am also aware that I might have googled diagnosed myself so wanted a second opinion before heading off to the Dr’s. Also I am interested to here what people’s experience of their GP has been have they understood what it is and heard of it or will they just fob me off with you have tight muscles do lot of swimming and stretching which is whats happened previously.
So why do I think I may have CMT well from about the age of 13/14 my muscles started getting really tight and I started getting ankle pain I had some orthtics but when I got to about 20 stopped wearing them. I type of learnt to manage it knew if I had knee pain I need to do some stretching etc. I managed to run the Great North Run twice without orthotics and although I always thought it was odd how tight my muscles were just lived with it.
Then fast forward ten years to when I was 30ish my walking gait seemed to have got considerable worse and my muscles even tighter. Walking just 0.5 miles made my legs ache and my calfs felt like bricks I was also getting cramps inside my arches which are quite high. My posture had also got considerable worse with a slight curve in the spine and round shoulders and I also have zero core strength and really tight back, neck and shoulder pain. I then got another pair of orthotics which really helped with my foot drop and relieve the back and neck pain and have made quite a difference. I should also add that my hands get quite tight and I struggle to hold a pen and write my writing has really deteriorated over the last 5 years (this is the bit that really makes me think about CMT).
Then we get to Wednesday just gone I go to the Physio because my orthotics have been bothering me although I have been doing lots of excercise and feel stronger than ever. We go through all the standard flexibility tests and he then realises my ankle dorsiflexion has got worse and especially my big toe joint and planta fascia hence I start googling tight ankles because it seemed odd that they had got tighter despite all the stretching and flexibility work I have been doing.
Also something else (sorry nearly there) and prob the most important I have a 6 year old son who is starting to show early symptons of what I have. Tight muscles, pronation, the outside of his feet are rubbing he is a slow runner and his motor skills seem slightly delayed. I have been convinced since he was about 2 that he had inherited my high arches and was going to have similar problems he was checked over at the time and was told to leave it again until he had grown more. We are going back on Friday to see a NHS physio and I am now wondering if I need to mention CMT.
I must add if I do have it I would think I probably have it very mild compared to some people I am very active walk the dog 3/4 miles a day and do lots of running like I said I just learnt to live with the tightness and work round my issues with lots of Physio, foam rolling, acupuncture etc.
However the decreased ankle movement has freaked me out a bit and made me think is there something else going on which I can’t control and also the fact CMT is hereditary would explain about a lot about my son having issues as well.
Phew think that’s about it so is it worth a trip to the GP’s or am I been paranoid? and will they just tell me to keep doing what I am doing and send me on my way?
Also if diagnosed what treatment/services do you get from the NHS do you get Physio, orthotics etc or is it limited and I am better staying with my private Physio?
thanks for taking the time to read sorry it was a bit longPhil82ParticipantPosts: 0Joined: 03/02/2019February 3, 2019 at 12:54 pm #175148Reply To: Have I got CMT?
Hello and welcome Phil. Indeed a very comprehensive history and one that is much better related to your GP who is much better situated to decide how best to progress. It is the experts, like neurologists for example, who will be able to tell you what the cause of your symptoms are and thus how they should be treated. By all means mention your concerns to the physios who may also be able to point you in the direction of the best expert help. Diagnosis of conditions such as CMT will take a comprehensive approach from experts, testing and of course yourself. However, it is so important to get the right diagnosis, even if it takes some time.
Once you have that diagnosis, whatever it may be, you will find it very much a postcode lottery as to what is available to help with your needs. But the most important thing is to seek expert medical advice as soon as possible and then you can udnerstand what needs to be done with yourself, and possibly your son.
So many love songs, so little love.embayweatherModeratorPosts: 8Joined: 02/11/2015February 6, 2019 at 2:06 am #175219Reply To: Have I got CMT?
Hey mate I’d get it thoroughly checked out. Long story – short, Recently I “Google diagnosed” myself with limb girdle muscular dystrophy because the symptoms match my experience, I’ve now done two blood tests checking CK levels and they were alarmingly high.
Now I’m starting the medical process of elimination, because while my self diagnosis may not be correct there is definitely something causing several enzymes in my blood to be elevated, some possible causes for this may be very serious.
I am 34 years old and have battled through symptoms that I struggled to understand since my teens also, so if your convinced something is up get it checked proper.
Oh and most normal gp’s don’t have much experience or exposure to rare disorders so you may have to plead your case.
All the best.djt91184ParticipantPosts: 0Joined: 02/01/2019February 6, 2019 at 12:45 pm #175237Reply To: Have I got CMT?
Thanks for the replies going to the Dr’s next week so see if I get anywhere.
If they don’t seem interested I’m hoping that when I mention my mums has Primary Progressive MS then they then might agree to check me for something.Phil82ParticipantPosts: 0Joined: 03/02/2019
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