Hi everyone, I am sick of being misdiagnosed and I'm starting to harbor some anger towards doctors and medical professionals (despite being one myself!). I have recently had some deterioration in a condition which was previously labeled a viral inflammation of my sacral nerve roots (causing lower limb paralysis, paraesthesias and neuropathic pain, predominantly on the left side). The doctors were never certain this was the real culprit.
My feet have always pronated (rolled in), but lately I've noticed an extreme worsening of this as well as increasing in the curling of my toes. I have also had more fatigue and weakness than usual, and badly sprained my right ankle for absolutely no reason about 6 weeks ago.
My dad also seems to have very similar looking feet to mine, which have only gotten worse over time. He has always been awkward on his feet, and has a very stiff gait when he walks and runs, lifting his feet up quite high out the front instead of getting toe push off. Dad tends to sprain his ankles at least as often as me, if not more.
My grandad (dad's dad) was physically disabled with "post polio syndrome". I am not so sure this is what he really had, as the history of him having polio was unclear. He was mobile most of his life with calipers (KAFO's) and orthopaedic footwear and only required a wheelchair in later life.
I am asking the experts in CMT - people with the condition - what you think. Does this look like CMT? I'm 24 years old and quite fit and active. I run, bike and swim quite easily but I'm just getting a lot more muscle fatigue, cramping, and having difficulty walking without supportive shoes. I seem to be slowly losing strength despite loaded strength training. I haven't lost a lot of sensation except at the very tips of both my big toes.
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tulip92
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You need to see a neurologist and tell him your family history. You seem to have some common symptoms with CMT though. My husband was diagnosed with polio, as a child, and only got a correct diagnosis, in his teens, at a military hospital. Do not give up until you are satisfied that you diagnosis is correct.
Oh yea, my husband has lived a full life, filled with travels and adventures, so do not give up no matter what the diagnosis.
Hi Tulip92. CMT generally affects all four limbs and equally between left and right sides. I first noticed weakness in fingertip grip and then inability to raise myself up onto my toes. This was in my late 40s. My CMT is type 1a, the most common variety. There are several other types which have variations on the symptoms, though symptoms in all types can vary considerably, including age of onset and severity, even within members of the same family. Do try to get a neurological consultation, I was lucky that my GP has neurological training, beyond that which a normally qualified GP would receive, and quickly identified the cause of my symptoms. I'm now 64 and 'moderately inconvenienced' by CMT. It doesn't define my very active life because I don't let it! Best wishes Malcolm.
hello Tulip , Malcolm has given you good feedback, you have to see a neurologist of coarse, funny how your photos of your feet look like high arch from the side but when you are standing the arch is collapsing like flat feet do. it is very common people with CMT to have high arch and your toes are slightly effected if any ?.it looks like you have some pressure points under your feet and if they start to get callus make sure to look after that . do you notice on top of your foot you have a higher mount as well,i can only see this on the first photo . my feet look similar like yours. that does not mean you have CMT. by the way I have CMT ! you need to do a genetic test with a blood sample and a nerve conductivity test . this will confirm for sure if you have CMT or not. it might be costly ! the fact you are active in sports is a very good sign, most people with CMT are not ! last and not least People are effected in different levels and ways with CMT. i read so much on this CMT . i only just found out i have it at the age of 53. CMT gets worst as you get older as well . be positive about everything in life . we all have problems thats the way it is . only at the movies and magazines looks cool and perfect. Let us know Tulip how you are going with all this, we all care about you. i live in Australia by the way. bye Oliver De Battisa.
Hi Oliver I am also in Australia! My feet have a very high arch when they are resting and the plantar fascia (tissue band underneath) is quite tight. However, because all the muscles in my feet are extremely weak and my joints are very hypermobile, they flatten completely when I am standing. This is what I have noticed has gotten worse lately - my inside arch now touches the ground! I have also noticed that my toes are curled a lot more when they are resting. They used to be flat to the ground. Thanks so much for your kind and informed feedback!
Thanks everyone for your feedback!! I will be seeing a podiatrist soon to review my in-shoe orthotics, so I will bring this up as well. When I next see my dad I will suggest we go to the GP together and seek a referral to a neurologist.
Hi again Tulip, I see you use in-shoe orthotics. I also use these, to control foot drop, and they are a godsend. We get them provided by the NHS in the UK. Something that also works wonders for me are MBT rocker-soled shoes. They help to simulate the roll of the foot, when walking, that we no longer have. With the combination of MBTs and orthotics my walking is almost normal (barefoot I struggle to walk at all), though standing-still remains a challenge. The MBTs tend to be quite heavy, and certainly wouldn't suit everyone, but I'd highly recommend you to find a retailer in Australia and try a pair out. They are quite pricey but, if you find a pair that work for you, they can usually be obtained more cheaply online. Best regards Malcolm.
Hey Malcolm, thanks for the advice. That's one thing I notice - that my walking is so much better in boots and trainers with orthoses. When I walk barefoot at home, it's so difficult.
You could well have CMT, but unless you have a type of mutation which has been previously identified a blood test may not help. What you need is a nerve conduction test which will tell your neurologist whether you have type 1- demyalinating CMT or type 2, in which the nerve axons themselves die. If you have type 2 or one of the rarer types you may not get an answer from a genetics test. My feet looked a bit like yours and I sprained my ankle more than most from my teens onwards but CMT only became a real problem for me in my fifties when it had got so bad that surgery was the only answer. There are many things that can slow down the impact of CMT and make life more comfortable. You are helping yourself by being active.
Doctors are strangely slow to recognise this relatively common diseaes and to refer patients to specialists. Your Gp might welcome a suggestion....
Hi REGreen! Thanks for your comment. I have a question regarding the demyelinating type. I have had a very slow decline in strength and function over years, but on three occasions I had very quick periods of extreme decline after a period of high stress and illness. Some function was recovered over weeks and months following these periods, but never back to 100%. Is this something that can occur with CMT demyelinating types? Or is function lost completely? MS has been ruled out (I've had 3 brain MRIs)
With my Type 1A, (demyelinating), I certainly seem to have had periods of more rapid deterioration in between apparent plateaux of stability - a bit like an irregular series of descending steps. It is certainly possible that deterioration can be made worse by other stresses in life, but i think that in reality the progression just goes on slowly, stealthily and continuously, while you unconsciously adapt to your gradually changing condition - until you find you can actually no longer do something you could just about manage before, Then you feel you have gone down a step. However, it does seem that by keeping as active as possible you can slow the progression a bit.
The only thing i know personally about regaining any lost function was when I was totally unable to walk after 6 days in bed after a (successful) cancer operation and an epidural. It took a great deal of effort and determination and an extra week in hospital to regain the ability to walk well enough to go home - but i probably never got quite back to where I had been before.
Apart from that my experience has been: if you lose it, you don't get it back.
We all have type 2 so I cannot answer from experienceof Type 1A. It certainly isn't a continuous downhill decline. I have experienced sudden worsening of symptoms, long periods when there appeared to be no change and some improvements. When I had the nerve conductuion tests I was told that there was evidence of re-enervations so it is possible for new nerve pathways to be established and keep you going for a while. Every body has a different experience of CMT, even with the same mutation. For example my sister was affected by loss of sensory nerve fibres first causing numbness, while I was affected by loss of motor nerve fibres first, although after 15 years we are both starting to experience loss of both types of nerve fibre. My father appeared to lose both types of nerve fibre at the same time. Periods of stress or other illnesses do seem to coincide with worsening symptoms.
on the subject of doctors/medical profession being slow or ignorant to pick up on diagnosis of cmt, i also find it inpossible trying to get treated properly once diagnosed, i had official diagnosis around 2 years ago, but due to my mother being a sufferer i had known i had it for around 20 years. my sister is also a sufferer and i find shes know about and receives alot more treatment to help her manage than i do...her doctor seems alot more up to speed with cmt....whereas my doctors just fob me off all of the time...and never let me know what i have access to and what i dont
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I am also in Australia! My feet have a very high arch when they are resting and the plantar fascia (tissue band underneath) is quite tight. However, because all the muscles in my feet are extremely weak and my joints are very hypermobile, they flatten completely when I am standing. This is what I have noticed has gotten worse lately - my inside arch now touches the ground! I have also noticed that my toes are curled a lot more when they are resting. They used to be flat to the ground. Thanks so much for your kind and informed feedback!
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