CMT Central

hello everyone i am new to this forum

my name is zenab and im 21 yrs old and i live in london. i was diagnosed at 8 with cmt. i didnt get any treatment as thay said it was not that bad but i did have speical stuff for my shoes. i have very high aches with is common in cmt type 1 i think not sure. i stoped seeing my drs when i was 15 as i was over the age. but i didnt see anyone after that as the gp said he didnt think i needed to see a dr as i didnt have many problems with the cmt.

when i was 6 the drs find that my pituitary gland was not really there and so i was not making any growth hormon so when i was 6 i started growth hormon injections 1 a day and stoped it at 14 as i had grown my full height.

all my problems started at 14 i started getting lower back pain and it just slowley got worse and worse i was in pain all the time and had to use a wheerchair after 2 yrs of going up and down to the hospital i was diagnosed with anklosing spondylitis its arthritis in the spine when i was 16. since then life has been really really hard. i am on anti inflammtrys and a lot of pain kills everyday but the pain is still very bad everyday all day long. studying was really hard to do my work with the pain being really bad i manganed to do a full year at college but i missed sooo much. i couldnt cope with studying anymore it was just sooo hard to just get to college and getting thou the day and i just couldnt cope with it anymore. i stoped college in 2007. my mobility is very bad for long disentances i use a wheerchair.

right now me and my mum i think maybe at the same time as my back problem maybe my cmt mite of got worse. but i asked the people that were in charge of my cmt but thay said the cmt dos not cause pain and joint pain and my rhem said that too. but we are starting to think maybe it has got worse. like im in the home most of the time but i full sooo much my balence is really bad it was very got a few yrs back but no its bad. when i am standing i will suddenly fall but never on the floor i make sure i dont fall cos that will make my back worse. and my feel keep going it moves soo much my feet dont stay steady. ive always got pins and needles since the diagnoses but i knew to avoid that i made sure i didnt sit on the floor at all so it was mangeable but now i get realy numb and get loads of pins and neelds. all my sjm are much worse then what it was befor.

so i am going to ask my gp to refur me to a nero dr to see if thay think it was got worse and what thay can do to help me. i had the emg test when i was 9 and thay said there was damege but i think i got the synol but was slow to respond. ive always had to refexs in my legs since 9 and now my rhem was just checky and my legs did move but also my arms so that made me worred as i dont know how my cmt is right now as ive seen no one since the age of 14.

i know this a very big messege i just want to see if anymore as any common problems to me and just advise about what u all think i should do

thank u sooo much for any replys i get. i am saying it now as i am not able to use the compter as i also have the arthritis in every joint in my body also my hands and wrists so i have pain in all my joints and my back all the time. so lifes been really hard but i have always been used to dealing with samething all my life so i am used to all this but even the strongist young peron in the world we get to a point where thay cant cope i am at that point right now.

Hi zenab, welcome to the forum! I'm sorry for all of the pain you are going through. I wish I could add something to help you.

Hi Zenab.

Sounds as if you really need to see specialists regarding your problems as they seem many.

If you got your pain sorted out and arthritis controlled I am sure you will feel much better. Do ask your Gp for referals.

Hi Zenab welcome to the forum.

If I were you I would write out a list of all your problems and then go to your GP and ask them to refer you to a specialist. Take your list to the hospital when you go as well. It is so easy to miss things out or forget if you do not take your list.

Hope all goes well for you

Hi Zenab. Welcome .
simon gets joint pain, which although is not caused by the CMT, it is a result of the CMT. because of his high arches and the way that he walks, the stresses on his ankle, knee and hip joints, are not "normal" as it were. so he gets pain pain in his joints as they are not aligned as they should be when he stands/walks.
i'd agree with sally, when you go to the hospital or see the specialist take a list of all the problems you have, even those you are not sure are related to the CMT.

I think you mean you agree with Sally, not me

Oh and whats "joint paint"???

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Sorry, I'll be serious now ...

I get the same joint pains as Anna's Simon does, and I'd agree 100% with Anna's reasoning for why this happens.

I get lower back pain also Zenab, but also shoulder and neck pain too. I have massages on this which help alot.

Regarding the pins and needles in yours feet, I get pins and needles and numbness in my lower legs, feet, forearms and hands very easily. It is not constant, but is brought on VERY easily by even the shortest time spent leaning on an elbow or crossing my legs etc... and the pins and needles and numbness can remain for half and hour or so.

Getting a neurologist is ideal, they should be able to help you alot and can be a gateway to lots of other treatments and resources. I agree with Sally, write down every possible question and take it with you when you go for your appointment.

Oh and a huge welcome Zenab

Hi Zenab, sorry to see you've had such a long time suffering Hopefully though the great advice from our lovely Family here will help. Definitely get yourself to see a neurologist and if they don't help ask to see someone else! I've been pushed from pillar to post with all of my pains and symptoms But finally I found one who was prepared to listen to me It turns out I've got more than one condition, but some of the symptoms are the same... just some strange anomolies that make you think you're going mad!
Anyway, goo d luck and keep us posted!