New comer!

[Primary-Bursar]

Hi

I stumbled across this website whilst researching my recently diagnosed condition (which I had never heard of by the way!)

I am waiting for an appointment to go and see my neurologist having now undergone all the tests. I have may questions. Maybe I may find some answers on here beforehand.

[CMTUnitedKindom Partner]

Welcome to this HealthUnlocked group. Hopefully, we'll be able to answer your questions!

You should also check out our website at cmt.org.uk where there is even more information.

Karen

Trustee, CMT United Kingdom

[Primary-Bursar]

Hi Karen

Thanks for the welcome and the link to the CMT website but I found that first and followed the link to this site.

[Whiterose]

Just Post a question and we will try and help you.

[KarenNic]

Hi. Im new to this forum, but was diagnosed 33yrs ago so happy to answer any questions (non medical prlbably best lol)

[Primary-Bursar]

Hi

Thanks for your comments. I am in my mid 50's, questions I have many! Here goes:

1. Does any form of exercise help strenghen the legs muscles?

2. I have been supplied with a leg brace for my foot drop but the only problem is that none of my shoes will fit when I wear it. I have been back to orthotics and their answer is to wear trainers, but I do not want to wear trainers all the time. I can't believe in our modern world that there isn't something lighter which will do the job. Is there, but do the NHS not supply it due to the cost?

3. I have an 18 year old daughter, if you have children did you tell them about the hereditary part of the disease? I inherited it from my mother although she never knew she had it. Sadly she is no longer here but the symptoms now all make sense. I believe she had it from an early age whereas in hindsight I believe mine started eveloping after the birth of my daughter.

Finally for now...

3. Has anyone been able to obtain a disabled badge for parking?

Thanks.

[CMTUnitedKindom Partner in reply to Primary-Bursar]

Here goes - some answers (hopefully)

1 Many people benefit from doing leg exercises, to keep strong and help keep mobile. What to do is very much dependent on your personal abilities now. As a general rule of thumb, it's unlikely that you'd be able to strengthen the calf muscles, below the knee, because once they are weakened by CMT, it's almost impossible to get them back. However, working upper leg muscles, such as on an exercise bike or some other form of non-impact exercise, could well have a beneficial impact on walking ability and endurance - we use the upper leg muscles to walk, not the lower ones.... otherwise, we'd all be in wheelchairs by now. I would highly recommend asking your GP to refer you to a physiotherapist to see what they can recommend - don't just take my word for it, because I don't know your personal situation.

2 Shoes - ah blimey, the perennial problem with splints. There are a number of suppliers who provide deeper, wider shoes that MIGHT accommodate your braces - have you tried Cosyfeet (cosyfeet.co.uk) for a start? Also contact ShoeMed - shoemed.co.uk - an independent shop in the Midlands who will advise over the phone; some members use Padders; there is also a website called widefitshoes.co.uk that might do. The NHS can and do custom make shoes, but there is still no guarantee that a) they'd be any good (!) or b) that you'd want to be seen dead in them!

3 I have children - both with CMT - so I've never struggled with telling them, they always knew, right from when they were tiny. All you can do is say - this is what I've been diagnosed with, there is a possibility that you may also have it (if you want to go that far) and take it from there. I always advocate total honesty - anything else just might get you into trouble down the line...!

5 Yep - had my blue badge for donkey's years! Contact your local social services for the form. If you have Disability Living Allowance (high rate mobility component) you qualify automatically, so it might also be worth checking out to see if you're eligible for this benefit. If you don't want to go down this road, I believe your GP has to authorise the form - which hopefully, shouldn't be a problem. Do get one, it will revolutionise your life!!

Karen

[CMTUnitedKindom Partner in reply to CMTUnitedKindom]

ignore my question numbering - what happened to comment 4.... oh yes, there wasn't one. Oh dear, losing my marbles, too!

[Primary-Bursar in reply to CMTUnitedKindom]

Hi Karen

Thanks for all the information, I am going to see my neurologist for the first time next week since I received the letter from him containing my diagnosis so I am hoping I will find out how weakened my muscles are. I am still under the physiotherapist as I was attending for arthritis in my knee and it was him who discovered that there were further problems eg drop foot and no reflex from my knees down and so the story goes... So all the information regarding CMT I have found by searching the web myself, which is of course is where I stumbled across this site.

Regarding Disability Living Allowance, I still work so I don't think I will qualify for this, will I? However, a blue badge would be beneficial so I will start the application process.

Thanks for the advice about telling my daughter, I will think on that for a little longer.

In your experience does CMT affect insurance premiums ie travel, life etc?

Thanks.

[CMTUnitedKindom Partner in reply to Primary-Bursar]

Re DLA - working has no bearing of this benefit, it's related to what you can reasonably do, not whether you still work. So it's up to you as to whether you want to give it a try.

As I've said to someone below, CMT shouldn't affect travel insurance, it's just a matter of finding the right insurer. Life insurance also should not be affected, since CMT doesn't do anything to you that could have an impact on your life expectancy, but I do know of people who have been refused or had it loaded. Again, it's just a matter of finding the right insurer who knows what they're talking about. We had a member recently who was refused - is it critical care cover? The one that replaces your wages if something happens to you? Anyhow, the insurance company found one obscure paper on the Internet which implied that CMT causes heart problems, that demyelination also affects heart nerves.... It's bull**** - not to put too fine a point on the matter. I sent the paper to Professor Mary Reilly, the UKs leading CMT specialist, and she completely pooh-poohed it as being purely speculative and totally wrong. Armed with that information, the person went back to the insurance company and they backtracked and provided the cover at the usual, unloaded, rate.

If you feel you're being, or have been, treated badly by an insurance company, hit them where it hurts and go elsewhere! There are plenty more who would be glad of your business!

Karen

[cleo9]

Hi I have found that travel insurance is loaded if you have CMT by about £20

[CMTUnitedKindom Partner in reply to cleo9]

It shouldn't be - but it does depend, I would imagine on your degree of impairment.

I've used insureandgo.com several times for myself and my daught - they have a "medial screening" option where you can put in CMT (and it's recognized!) and they don't load at all, not even for travel to the States.

There are a number of insurance companies who specialize in pre-existing conditions but they can be more expensive. Use the comparison websites, I'm sure they will come up with some reasonable options.

Karen

[CMTUnitedKindom Partner in reply to CMTUnitedKindom]

Oh stupid auto correct on my iPad - should read "daughter" and "medical" screening.....

[lilybet]

Hi PrimaryBursar I'm fairly new to the site too but was diagnosed 30 years ago so do my best to help with any questions you may have.

[lilybet in reply to lilybet]

Sorry PrimaryBursar I forgot to mention, re -DLA allowance, that I've only been claiming it for 3-4 years myself because I too thought that you mustn't be working to claim it but that's not the case (the not working applies to the old incapacity benefit).

Also, the DLA form does not include questions about work or income because it is not a means-tested or taxable benefit. They just want to know what you can't do and what you need help with. (Benefit now called PIP).

NB. You just have to be aware that when answering the questions on the form that the work you're doing requires the same help as if you were at home. For instance, part of my job used to involve a short walk morning and afternoon but I was able to cover this in the form when answering their questions on walking distances, effects of walking and help with walking.

Hope this helps.