Eyes and speech affected?

[spabbygirl]

A few years ago I had optic neuritis, the only symptom I had was fuzzy vision in one place only so I went to the opticians who referred me as an emergency to the GP and the GP referred me to hospital. I was asked to attend the emergency clinic & I did, but both eye drs and neurologist confirmed it was nothing to do with my CMT. But my new neurologist said that it was, because there is myelin in the optic nerve and he has written a paper about it. Then I began to get problems with speech, just sometimes I try to say something but nothing comes out. It rights itself with a second or two and most people just think its a stutter. I asked for a referral to my consultant but meanwhile chatting it over with a dentist she said the eye & mouth nerves are linked, so she thought it probably would be CMT. The thought of loosing my vision & speech is scary!! Has anyone else had this?

[HorshamMalc]

Hi Spabbygirl. I'm not saying it isn't CMT as the symptoms can be so diverse, as we all know. That said, I've done a great deal of background reading of research papers on CMT, both from the UK and abroad, particularly the USA. Although certain conditions such as sleep apnoea and tinnitus are not generally regarded as standard CMT symptoms, they are sometimes mentioned anecdotally, but I've never seen anything related to eyes and speech mentioned. I would be interested to get a link to your neurologist's paper, if that were possible? CMT is a peripheral neuropathy and I wouldn't have thought that eye and speech related nerves would be classed as peripheral? I hope your problem turns out to be something transitory that resolves itself in due course. Best wishes Malcolm

[spabbygirl in reply to HorshamMalc]

Hi Malcolm, I'll try and find it though I have to go out in a minute so it might be tomorrow. He's Dr (or Mr?) Benjamin Wakerley now at Cheltenham Hospital previous of John Radcliffe. he said his paper was based on conjecture because myelin is in the brain as well. I'll be interested to see what you think, take care, Lynne

[spabbygirl in reply to HorshamMalc]

ncbi.nlm.nih.gov/pmc/articl...

I can email to you Malcolm if thats easier

[HorshamMalc]

It's OK thank you, I was able to open it from the link you kindly sent. Very interesting, do you have that rare type CMT4B1? It seems the individual studied in the paper was a very unusual case, with CMT4B1 and from a community where consanguinity in marriage is common practice.

[spabbygirl]

No I have bog standard type 1A. Curious isn't it?

[bb123]

CMT can in rare cases affect the cranial nerves. So it could possibly cause eye problems- but I don't know what kind of eye problems specific to CMT. I'm not sure about the speech, though. I have CMT and also problems with my 7th cranial nerve which affects facial movement (I have facial spasms). I also sometimes feel painful twinges in my face. I believe theses are related to my CMT.

[utterjoy]

Hi,

I'm just curious if you have managed to find a solution to your speech problem as I have exactly the same thing and it's driving me bonkers, very frustrating and my speech problem seems to be linked with losing control of my leg muscles and has led to me having lots of falls which is becoming a huge problem. I have cmt type 1A and recently had an mri scan to rule out M.S as a possible cause of the symptoms. It came back negative so now i'm no more the wiser as to why these problems are becoming a daily ocurence.

Regards

Beth

[spabbygirl]

Hi Beth, I've got exactly the same symptoms as you, speech & leg muscles and I have type 1A. I had an MRI scan a few years ago and that ruled out MS, but as far as speech goes on Tuesday I'm having a camera put down my throat to check it isn't anything else. I guess that will lead him to conclude one way or another. Meanwhile my dentist & a vet friend say that if he believes my eyes are affected by my optic nerve because the optic nerve is connected to the nerve supplying the eyes, my speech problems are probably an extension of the same condition.