Does anyone with CMT have problems with eye sight??

[Boneshaker]

My eye sight has changed alot over last 18months and had to have blood tests done but all came back normal! So was just wondering if anyone has had a prob with eye sight?

[curlyburli]

Its so easy to put down all symptoms to cmt related. You may have cataracts, or age related macular degeneration (sorry dont know how old you are). There are many eye conditions out there.

I have been shortsighted all my life and had a squint (now repaired) which got worse when I was tired. .My neurologist said the squint was due to my cmt.

[CMTUnitedKindom Partner]

That's absolutely right. The changes of your eyesight problems being down to CMT are so slim that it's highly unlikely.

It's like deafness - some CMT forums will tell you, in no uncertain terms that deafness is down to CMT - but deafness is very common in the population - just like common eyesight problems - so some people, statistically, are bound to have both!

And it can be dangerous to blame CMT on everything, as it could be something eminently treatable.

Hope this helps!

Karen

[Boneshaker in reply to CMTUnitedKindom]

Hi Karen

Thanks for yr reply I didn't think it was cause of my CMT but was just wondering as never had prob with my eyes and was just worried! I now am gonna have new glasses and hopefully that will sort my eye prob out! I am only 45 once again thanks for yr reply x

[strawberryshortcake in reply to CMTUnitedKindom]

I was told my deafness was due to nerve problems.as were my wobbly eyes.

[Barry52]

Lets be honest even the So called experts haven't a clue about what it does cause and what it does not cause, they have not got a Scooby Doo...........

Neurologists are highly qualified in telling you what it is,but no clue what to do about it..........

[CMTUnitedKindom Partner in reply to Barry52]

Well, I think that's a bit harsh - yes, your local neurologist may not have much of a clue - they all have specialisms in a whole variety of stuff - from epilepsy to alzheimers, ms, and whatever... But the ones who are researching CMT and specialising in peripheral nerve disease - like Professor Mary Reilly at the National Hospital for Neurology in London (and the fount of all my knowledge) really DO know exactly what is going on, and what to blame on CMT and what NOT to blame on CMT.

I know finding a good neurologist is a bit like finding hen's teeth, but they are out there....!

Karen

[Barry52 in reply to CMTUnitedKindom]

Hear a lot about advances with MS treatment but the CMT world is very much void of information heard about the failed vitamin C,what if any treatments are being looked at and why is cmt specialist only located to London why is there not regional clinics

[John1945]

Hello Boneshaker....

I have had C.M.T. Type 1a (totally unknown to me) since my birth 67 years ago: However in my mid-fifties, I was further diagnosed with Diabetes Type 2 (non-insulin), which results in you having an annual referral to a Retinopathy Clinic for an eye scan to examine if you have any "dot" Haemorrhage's in your both eyes blood vessels:

Your own optician will examine, and photograph the back your eyes, to identify any items of concern, during a standard NHS eye test ! I suggest that you start there ?

John (Glasgow)

[strawberryshortcake]

I was having trouble with my eyes,not being able to readbecause my eyes became so blured I couldn't see the words, the words would seem to wobble about on the page. the optition sent me for a consultation at the hospital . I was there for hours and had lots of different people looking at me. Eventually I was told i had wobbly eyes due to a nerve condition and nothing could be done about it.I have put this down to CmT.

[pappysean in reply to strawberryshortcake]

..I have this to, as I also have dyspraxia, I have not automatic tracking of words on a page, so my eyes are always in strain...I believe there is a link between scoliosis and dyspraxia, and of course there is a link between scoliosis and CMT...

[strawberryshortcake in reply to pappysean]

I think have dyspraxia as well.

[pappysean in reply to strawberryshortcake]

I think you have to... x

[spabbygirl]

I had optic neuritis a few years ago, the nerve to my right eye became swollen and affected my vision, for a while my left eye did too. I had every test possible and all came back negative. I had another episode a few months after the first and my GP diligently sent me as an emergency to the on-call dr at our local hospital. They couldn't see the swelling this time but said their equipment sometimes isn't sensitive enough to pick things up. I think that this sort of neurology isn't that well understood yet, I suppose it's harder to research a living nerve in a brain so this study is in it's infancy and though my neurologist said it's not CMT related, others were less sure. In other words, as someone else here said, they haven't got a scooby-doo! Lynne

[CMTUnitedKindom Partner]

Further to various comments above - there ARE peripheral nerve clinics around the country - not many, to be sure, but there are a few.

And going back to the original question, following a scientific workshop that I attended last weekend, Type 2a CMT can (rarely) also include optic atrophy - due to the protein involved (Mitofusion2) in the mitochondria

Karen

[bob_s]

I wore contacts for a long time but in the last couple years I developed double vision. I am in the process of going back to glasses with a prism grinding in my left lens because my left eye is looking outward from my right, thus, causing double.vision. The strength is 6 diopters.

[mhollis in reply to bob_s]

My son was diagnosed at age 17 with cmt..they r saying cmt 3. He will have double vision in his right eye and he also has had the same eyeball get stuck in one position. Sounds like the same thing as yours. It must have to do with cmt and the optic nerves. I thought cmt only affected the limbs.

[Johnson27]

My son has CMT and his eyes tremor if he is asked too look at an eye chart or into a light. His neurologist said that it was the CMT causing it. Other than that he has perfect vision. My son is 27.

[patrick8c]

I sometimes see a lot of spots making my eyes unfocused a lot and I need to stop what I am doing and give my eyes a rest, I didn't mention it to the doctor as it only happens now and again maybe twice a week, I have had CMT for around 10 years and I find it hard to live with the pain, I am on Morphine Tab's three times a day and don't know if I'm coming or going sometimes so I put the problem with my eye's down to my CMT.

[softkins]

my left eye aches and my sight is blurred in the mornings...eyesight check came back normal ..I think its the a weak muscle .