I have CMT type 2, I attended eye cli... - Charcot-Marie-Too...

Charcot-Marie-Tooth UK

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I have CMT type 2, I attended eye clinic yesterday as when I read I suffer from double vision. They say it's muscle weakness due to CMT?????

nikkiogi profile image
10 Replies

I,m not sure. I do seem to be weaker on my left side and it's my left eye that's affected. Anybody else have weak muscles in their eyes which cause their eye to wander?

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nikkiogi
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10 Replies

I'm astigmatic especially in my right eye which is co-incidentally my weaker side CMT wise.

No-one's ever suggested this is as a result of CMT though.

ddiamond profile image
ddiamond

About 12 years ago while having my annual check up at the National Hospital Queen Square my eye sight was examined by a professor but I did not hear any more of it.

ddiamond

bob_s profile image
bob_s

I have had this problem for a long time and I never thought about CMY playing any part of it.

The only time I really notice it is when I am watching TV or when I try to read the license plate number on the car in front of me. The doctor that fits my contacts can't figure this out. I will ask her the next time I have an examination. This really make sense.

John1945 profile image
John1945

Hello to nikkiog ....

A most interesting question ? I personally believe that, there IS a possibility that every muscle in a C.M.T. sufferer's body can be effected "in one way, or another" by C.M.T.'s muscle wasting phenomenon, that arises from, and accompanies this particular neurological disease ?

Yes, most Cmt sufferers, will also have a "weak" side of their body:

Mine is my left-hand-side, which was discovered, after my neurologist sent me for a "Nerve-Conduction", (NCS) study:

This is a most uncomfortable 'nerve-speed-test' procedure, in which probes are attached at your 'long' nerve endings, ie feet + hands, which will reveal your actual brain to nerve endings, electrical "wave-signals", true velocity / speed :

This debilitating / progressively / worsening disease (always call it a disease) and not a syndrome/condition/ etc, usually displays so many different, and varying symptoms which are all different to each individual to each sufferer:

I personally have "sleep apnoea" (weak throat muscles), hand deformity's (no muscles + no fine finger dexterity + finger clawing), weak legs (no calf muscles, or balance), etc:

Now we find that more, and more C.M.T'rs are increasingly reporting breathing difficulties, linked to their to diaphragm : I only recently discoverd that your diaphragm is actually the parachute shaped ! MUSCLE ! that separates your chest cavity, from the abdominal cavity.

It sits below the lungs and above the stomach and intestines: It is also controlled by your "phrenic" nerve, which again is most interestingly is contained within your body's 'Central-Nevous-System', that is protected by your spine, and brain, and is totally outwith your own bodies "Peripheral Nervous System": These are the nerves that are nearest to your skins surface, and cause much suffering to Cmt paitents, and their "off-springs" ?

However, we must not allow our Health Professional's to hide behind their diagnosis, and blame Cmt for very health defect !

Perhaps Karen @ C.M.T. UK, could use her links with Professor Mary Reilly, the UK's foremost medical neurologist, to request her opinion on your condition ?

Best of 'medical' luck to you ...

John .... (Glasgow)

nikkiogi profile image
nikkiogi in reply toJohn1945

Hi John, it's been 2 years since we last spoke, thought I'd let you know I have an Appointment with Professor Mary Reilly she doesn't know what type of CMT it is but did say that it can affect any muscle in the body. I'm going to the conference in Coventry so I might see you there if your going.

John1945 profile image
John1945 in reply tonikkiogi

Hello again to nikkiogi......

Remember to "write" down a list of your Cmt questions, BEFORE ! you actually attend your consultation, with Professor Mary Rilley, who is recognised as the NHS, UK's leading Neurologist on Charcot-Marie-Tooth disease ! ! !

Best of luck ! ! !

John (Glasgow)

Whiterose profile image
Whiterose

Interesting comments here. My eyes have deteriorated more recently. I need to ask the question if it is linked to CMT with my optician. In honesty I have put it down to spending too much time on computers!

Amanita profile image
Amanita

Double vision started bothering me 20 years ago and was attributed to astigmatism (both eyes). It was totally corrected with a new prescription for my spectacles, so I guess I was -and am- lucky.

ljacobs profile image
ljacobs

I am headed to see a neuro-opthamologist in Houston next week. My opthamologist and MD said that the double vision I am experiencing on my right side is either from CMT or brain tumor. I see double vision when I look to the right-not straight ahead

ljacobs profile image
ljacobs

I am in my late 40s and female. I have only ever had to wear readers 1.50 strength.

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