Charcot Marie Tooth

One of my Guinea Pigs, Archie died somewhere between 11.20am and 2pm today

He had contracted a URI (Upper respiratory infection) and it was developing into early stages of pneumonia.

I am devastated, he went downhill so quickly! I take note of how all my pigs are every day and up to about 5 days ago he was fine, breathing ok and not looking worse for wear at all. He's been on baytril (antibiotics) since thursday and was eating as normal up to yesterday...

On the 9th September (2009) I posted to my blog about getting a Soft Strapping Brace for my foot and ankle and wrist support... I had forgotten to post a photo so am doing that now.

Below is one each of the wrist support (left) and ankle strapping (right)...

Below is the wrist support and ankle strapping on...

I have at last got my Neurology appointment through.

It is on 16 December at Airedale Hospital. I have never heard of the consultant Dr Marek Kunc so don't know whether he will be any good with CMT but we shall have to wait and see.

Ideas for what questions to ask are welcome.... and how would I ask to be able to see him regularly (yearly or whatever)

Well of course, as expected, when I got the AFO back after going to get an insole fitted, the insole has made no difference what-so-ever. It is not even a solid insole, just one of those thin grey foam ones glued in. If I knew that was all they were going to do, I’d have told them I’d already tried that!

Following yet another appointment, the AFO was sent away again... this time to have the front softened and extended slightly.  I thought this would wo...

I have a weeks holiday towards the end of October and I think a walking stick would be useful as Claire and I are hoping to make the most of the week with a few days trips (including a couple of theme parks). I think a stick would be especially useful as I don’t expect my AFOs to be wearable for a full day by then (grrrr!).

Well, I was wandering back to the car from the pub on last Saturday afternoon and popped in to an outdoorsy type shop and found the perfect stick ...

My Orthotic Clinic appointment today went really good with just one disappointment.

My shoes were ready, and I can get my AFOs in them easily which is fab! The heels on the shoes need lowering, but we knew this would be the case.

My right AFO was rubbing and pinching under my foot. I was hoping that she would make a new one from scratch as this right foot one (which was made by a different orthotist) has been nothing but hassle and the left one that ...

I don't take any meds apart from Naproxen and paracetamol/ibuprofen as needed.

The Naproxen is doing very little, if anything for the pain and I do get quite alot of pain.  The paracetamol/ibuprofen also does nothing for the aches and pain and it is getting worse.

It seems like such a daunting task trying to manage it. I wouldn't know where to start!  A pain clinic seems the obvious choice? Having never been to one befor...

I am back at Orthotic Clinic at hospital on Wednesday, yet again. My appointment is to collect and be fitted for my new shoes and hopefully be fitted for the wrist splints providing my GPs referral has gome through.

I am also going to ask about my AFO Leg Splints again as they are still rubbing and pinching under my right foot... They have now cut the sole plate too short during the last round of adjustments so I don't know what the are going to do this time round...

I have been having a bit of a rubbish day in the last couple of days when it comes to tripping.

I am not in any more pain than usual but my feet feel like lead weights and are hanging off the end of my legs!

I have tripped and nearly gone flying four times at work yesterday before I changed my walking style to a slooooow shuffle. Today has been much the same.

Got loads to do at work but they will have to wait and go at my speed today....

I often wonder how many CMTers out there wear an SOS Talisman or something similar.

I asked the question on the forum recently and got a few answers.

I am interested to know how many of you out there wear a health alert bracelet of some sort and WHAT YOU WRITE IN THEM?

You can let me know by commenting on this blog or by email to cmtcentral@hotmail.co.uk

*** SAM ***

I have just been offered an advanced course at work from an external company.

It is a brilliant opportunity. The course results in an approved qualification.

I would love to do the course but I am really worried cos it is inevitibily going to involve ALOT of writting, not neccesarily the exam (as the exam is computer based) but more the taking notes and I struggle alot with writing like that. 

I don't know what to do.   ...

I got my AFOs back this week after being adjusted again, they still need more adjusting though, the right sole plate still isn't right. And now I think they have cut too much off the right sole plate so are going to have to redo the right one from scratch... it stops way before the ball of my foot.

How annoying... I thought this time I had really cracked it!

I'm going to ring up for an appointment as soon as possible, bloomin hard work though as the Orth...

I wanted to post an update on my mental state of mind since creating this website and the forum www.charcotmarietooth.freeforums.org .

I have found running this website and forum has helped so much in getting me to a "better place", of course I still have many low moments but being able to help others in the same position as me and in many cases being able to continue those friendships on the forum, being able to com...

Well I've had my GP appointment this afternoon and she's given me a fresh Naproxen prescription (I'd recently run out of the supply I had, but didn't realise my last one was in Feb 06!!! ).

She is also writing the referral for my wrist splints and the referral for the neurologist also.  So hopefully the referral for my wrist splints will come through in time for my other appointment which will be in around 3 or 4 weeks time when my shoes arrive.  She said I m...

I have been off work this week on holiday and have been doing a bit of decorating. my partner Claire has been doing most of it, and I mean most of it! I have not been able to do much at all, my knees have been giving way from under me and my hips have been agony after 15-20 minutes.

This made me think back to 3 years ago when we moved into this house. I used to spend several hours at the house every day painting, up and down ladders and sleeping on an airbed with just a wo...

Well the orthotic appointment went good yesterday.

Tanya (Orthotist) was very helpful, she understood exactly what needed amending with the AFOs and has taken them away to do those... I should have then back within 10 days, I can collect them from the hospital without an appointment like last time.

I discussed the difficulties with shoes and she has measured me for a pair of hospital shoes. We'll see what they look like when they arrive, they looked perf...

I am due back to the Orthotic clinic tomorrow (Wed 29 July 09)  following getting my AFOs (leg braces) 4 weeks ago.  Hopefully they will get my AFOs adjusted.  I am certainly needing them at the moment. 

As well as my AFO adjustments I am going to discus some other things that have been on my mind for a while.

I am looking at requesting some Night Splints and

I am going to go back to GP to review my pain killers as up to now I have been managing without really...

I have a prescription for Naproxen but haven't got any for months... recently though I've nearly used up all I had left because of the worsening pain so am going to discuss this with the doctors. To be honest, the pain can be dealt with (I Hope!!!) it is the realisation that things are progressing that bothers me the most.

Following on from my last blog entry, I'm going to try to explain another of the several new symptoms which have started happening more and more recently, pains in my hand and forearms.

This is mostly in my right hand/arm and the pain is present more often than not recently.

Most of the time this is dull aches in most of my hand extending up the top of my forearm. This on occasions turns to more severe aches in my forearm accompanied by sha...

I am getting quite a lot of pain recently and am generally noticing several new symptoms rearing their ugly head recently one of which is nagging, constant shin and foot pain in the metatarsal area.

A sure sign of a spurt of progression I think

I get mostly dull but turning sometimes sharp pains in my shins and also bad pain in my feet, like my bones are being crushed very slowly.

Nothing I take (Naproxen mainly) entirely shifts the ...