To be scared still by this doctor. Do they always say the worst thing?

(4 Posts)
ExtraJumper Thu 10-Nov-16 13:05:17

Took DS to a consultant specialising in gait yesterday as DS has developed a bit of intoeing and a sometime limp.

The doc said that he thought it was neurological and we should see someone else (fair enough). He also said it could be nothing to worry about, but it could also be Charcot-Marie-Tooth Disease. He mentioned the disease very quickly three times and I struggled to catch the name as I had never heard of it before, but he said he obviously could not tell if it was that.

I was a bit in shock, and DS (9) was in with me, so my mind went blank. However, like all good parents, I googled CMT when I got home - it's rather terrifying. It is a kind of muscular dystrophy and causes severe muscle wasting in the legs and arms. It is not life limiting, but it can cause significant disability and pain.

So I've now got a week and a half until we see a paediatrician. Do doctor's always do this? Do they always give a really bad scenario?

Also I'm a bit pissed off that he mentioned this disease in a very off hand manner, did not write it down, or explain it at all. Just "He may have CMT." And then waved us off. Is this normal?

DH has rightly said that we should not worry until we have to, but I am a mess.

TinklyLittleLaugh Thu 10-Nov-16 13:28:51

Extra, I have CMT, and yes I struggle a bit. But I'm 50 odd now and didn't get very good treatment when I was a kid. A couple of my kids have it; they are young adults now. We have always endeavoured to keep them active and followed whatever physio/orthotics instructions we were given to the letter.

Honestly, you would never tell with my kids. They are slim, healthy, go to the gym, cycle, swim, my on rus a couple of times a week and has done a few 10ks. Yes, in a sprint they are slower, they don't have much spring and can't jump, they take longer to recover from physical exertion. But honestly, when I compare them to their student mates, they are the trim healthy looking ones.

So yes, CMT is not a nice thing to have, but it doesn't have to be the end of the world. It is mostly inherited too, so likely either you or your child's Dad has it. And presumably you have managed so well you've never even been diagnosed.

If it does turn out to be CMT, there is loads of good information online (though remember, people who are managing fine won't be the ones telling their stories) or feel free to pm me.

ExtraJumper Thu 10-Nov-16 14:20:48

Thank you so much Tinkly, you have no idea how much I appreciate your post. I think that I have gone from 0-100mph in a split second. One minute my DS had a bit of a gammy leg, the next I was imagining him in a wheelchair and in great pain.

As you say, the only things you tend to find online are the really severe cases. I was finding it difficult to concentrate, leaping to a world where I had to tell my boy that life as he knows it will soon be over.

We will, of course, take whatever is thrown at us, but it is so so good to hear a voice of moderation.

I wish you, and your lovely sounding family continued happiness. You have calmed me down more than anything, and that can only be good for all of our family.

I think a lack of context from the doc and the temptations of Dr Google are a terrible combination.

TinklyLittleLaugh Thu 10-Nov-16 14:43:45

Extra, my Dad had CMT, he worked as a miner and a building site labourer, played rugby until his 30s. His CMT only kicked in in his 60s when he started to use a stick, and eventually a mobility scooter for days out. He could always potter about fine at home.

I had problems from when I was born, had to have surgery in order to walk and later as I grew. Got a formal diagnosis in my 20s. I was always rubbish at running, but did everything else fine. Only in my 50s have I started using a stick and yes, I use a scooter for a day out. My hands are a bit fumbly too. No pain though.

Your little boy sounds like my kids; if no one has picked up on it before now he is likely to be mildly affected. That is not to say that being a bit worse than the others at some physical stuff won't be hard for him to deal with. We always knew our two would struggle with stuff like athletics and football so encouraged them to be really good swimmers and mountain bikers.

Apparently one of the England cricket captains had CMT (I forget which) so that is a very positive role model.

Wishing you all the best anyway.

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