Topic: new today wanted to say hello!

Joined today as I am currently being looked at for cmt.  i have a bone scan with dye next week, followed by a mri scan next week , had some blood taken and will see the consultant at the end of january for the results.  i have had foot problems since a baby (talipes) but just seemd to progress sort of normally through childhood teens etc although i have never been able to run or do sport as flat feet!  never seen any doctors about it, as i have epilepsy and that takes over my life in terms of seeing doctors and when i mentioned the pain in recent years etc they suggested that long term use of aed's can cause bone problems so have been taking iron for years.   Just before xmas last i had enough of tripping , taking painkillers, no ability to walk any distance, continual pain in toes, calves, and popping sensation? in calves i went to my gp and said i needed to see somebody who dealt with pain or bones at the hospital as i could not at 45 yrs old stand this any longer as well as the epilepsy.  he referred me and i got the appt with orthopaedic guy it came thro in 2 wks he came up with possible cmt and organised all these scans im going for.   whoooah ive got that off my chest.  thanks.............cold hand and feet are something i have had for as long as i can remember,  wearing thicker socks doesnt help because finding suitable shoes is another issue!   help!!

Re: new today wanted to say hello!

Hi Hazel, welcome to the forum.

You have done the right thing in joining us, even if it's just to know that you are not alone.  Al our experiences may be different, some in minor way while others in major ways, however most of us know what you are going through to some degree.

The cold feet thing, I've heard of wearing extra thick socks or even two pairs but to me; well it feels the cold actually emanates from the inside!

I can't really imagine what it is like to have epilepsy and admire anyone who has to deal with it, I don't think I could.  In comparison, the continual pain of cmt is preferable in that at least I can bite down and fight it.

I'll keep the welcome short for now and have no doubt others will be along shortly to add theirs and some of their experiences.  I'll watch out for your posts and we'll chat some more on them.  Mean while, once again, Welcome and may the New Year bring you and yours some happiness and contentment.

I may be worse today then I was yesterday, but as I am better then I will be tomorrow I'll enjoy today.

Re: new today wanted to say hello!

thanks garth for your reply, i have had the epilepsy all my life but seems to have worsened in adult life for some strange reason.  i have been taking painkillers and iron tablets for a few years now having been told that i have possible osteoporosis due to taking the anti epileptic drugs long term but i have come to the point that this is something more.  i think you know your own body and when your toes are all curled and have been for as long as yu can remeber and the pain too much on certain days you have to ask is there any thing else wrong.  i am glad i did and got referred .  one thing the consultant did say in december was that there was no surgical intervention for my toes now as they were too bad then arranged all these scans etc.   i dont know where he came up with cmt from rather than osteo or arthritis though.   any knowledge of the scan process?

Re: new today wanted to say hello!

Also, sorry to be a pain could i ask, does anybody experience like popping sensations in the calfs like bubbles under the skin or are these muscles contracting .   pain in my lower back from walking 'funny' also was a part of starting this process off.   i feel like i want my feet breaking and putting in casts to get some stability to walk that will take pressure of my back.  i know i have fractured toes self healed (or not) and do have a cyst in cuboid bone in ankle as i had a mri scan for bone density but nothing has been done about this cyst..  i saw a podiatry person ages ago who just gave me a set of shoe liners to help me walk better... they were not worth the material they were made of as they didnt help and pain still there - never heard any more , i just carried on and thought this is how people must struggle walking.

Re: new today wanted to say hello!

Hi Hazel, I get those popping sensation in my calfs aswellIn fact I get them all over my body at different times but mainly in my legs and butt checks! For help with support with uour ankles ttry seeing someone in orthotics ( hope I spelt that right) for ' Foot up' smile

Last edited by Rebecca (10-01-2012 20:05:38)

Re: new today wanted to say hello!

hi, wasnt sure to continue with the post here.   i thought i would up date you with my progress so far.  i went for the bone scan with dye which was ok on an open scanner last week.  today i went for the mri scan of my spine and couldnt do it , i didnt know i was claustrophobic but i cried when i was to be put in the drum head first .  they were good with me and suggested i get a sedative or something and they would rearrange an appointment but there was no nerves right up until going into the room until i lied on the slidey bed and was going to go in the drum.  even though they said it was open ended , i couldnt not for no one.   why am i still tearful about not doing it and why didnt i?  does anybody else worry in scanners    thanks

Re: new today wanted to say hello!

Yes Hazel, and for many different reasons. 

As for still being tearful, well add to the fear of that damn machine you will also feel regretful and have difficulty in understanding why you couldn't go in.  You can't see a logical explanation, after all it is just another type of x-ray surely?  But the whole concept of being trapped is not logical nor is it something we can dismiss.

Stop being so hard on yourself and accept that you and the mri can't be friends, but there are ways.  Try it with the sedative and if that don't work ask if there is any way to have an anaesthetic before they put you on the machine.  It may not be rational but fear of that tunnel is very real and uncontrollable for some.

Good luck

I may be worse today then I was yesterday, but as I am better then I will be tomorrow I'll enjoy today.

Re: new today wanted to say hello!

thanks garth,  i was fine waiting for the appointment,  it is not as if i didnt know where is was going and i knew the noise that they make (i have had one before on my head)  which is absoutely dreadful so had set myself up for that. now i think about it i was delayed going in because they had a fault on the machine so i had to wait an extra hour for the person in front of me to finish and the fault to be dealt with!!!   even then i laughed about that when i went in the room but the minute i got strapped down by the neck and was told i was going in head first and the whole of me was going in .......panic.....where did that come from?   my gp has left a prescription for 2 diazepan to pick up when my next appt comes through and said i should be fine with them.  why i never thought that my whole body was going in when it was a spine scan they were doing i dont know what i was thinking!!  it still makes me sick thinking about it though.  im glad its quite common though reading on about claustrophobia etc.

Re: new today wanted to say hello!

Hi Hazel... re: the popping sensation, that maybe nerve pain (not necessarily painful, I know)... maybe anyway.  I get it anyway, just a little.

Not sure why they are doing bone scans for CMT?  CMT doesn't affect the bone density (not in the first instance anyway... wear and tear, and surgeries can lead to arthritis in the joints).

Nerve Conduction Studies and the normal starting point for testing for CMT, if that's what they think that is.  Then blood tests for testing for the sub-types from there, if needed.

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