Can the team tell me if CMT affects the hearing? For years I have been suffering from tinitus and recently it has got worse. When the tinitus kicks in then afterwards I lose my hearing for a few minutes after. I have also noticed that it is in both ears and I went to see my GP and he said that he could not give me any treatment as I have no ear drums. One last thing, the GP also said that l have a very slow trickle of discharge. It has been tested and came back as the ear wax that would collect as you would expect within the ear.
I am now going to see an ENT specialist in the first week of September.
Has anyone else had this problem? Is it related to CMT? If anyone has had this problem any idea as to what happens next?
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TB5598
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Hello to TB5598 ..... Have you been offically diagnosed with Cmt Disease, if so what sub-type do you have ?
I personally have inherited Cmt Type 1A from my father 69 years ago: Although it was offically confirmed by my Neurologist in 1998:
Never once, in that long period of period of time has any "health-professional", or fellow sufferers suggested that Cmt has "link's" to the loss of my hearing:
You are asking what happens next?
Asolutely NOTHING !
Cmt disease and its many sub types, only attack your bodies myelin sheathing, which is a wax like substance, and which "wraps itself around Pheriferal Nerves, providing insulation of the electrical "wave-signals, which are sending information to your brain, via your SENSORY nerves:
Information/touch/feelings/sensations etc?
The brain in turn, then digests this informtion, and then uses your MOTOR nerves to send back instructions, via your command/nerves/signals to your various muscle groups ?
Your pheriferal nerves are, sited just below your skin's surfaces:
Your body also has a "Central Nervous System", which is contained, and protected within your brain. and you spinal cord
Thx John 1945 I have been diagnosed with CMT 3. I have been issued with wrist supports (both wrists) taking maximum dose of Gabapentin and been told that I have other medication to start in the near future. At the moment I have mild scoliosis and I have already had surgery to all toes and left ankle and awaiting the right ankle to be done. Now when ever I do a simple task like making a cuppa tea, then I am at a high risk of burning myself due to the shaking, it feels like an earthquake in my hands. I see a physiotherapist three times a week, an occupational therapist call to my home twice a week to look at problems I am having and looking at the best solutions and ankle/feet supports are being made now as I can't get any shoes on. But I do suffer a lot of the following; dry mouth, sweating, passing urine, blurred vision and difficulty in focusing in the mornings as it takes up to 20 minutes for my eyes to catch up even though I wear glasses and recent eye check shows that all is well with the eyes. As for the dizziness I am not sure if that could be caused by the numerous amount of prescription medication or the CMT. But will be seeing my consultant in the next month along with my orthopaedic consultant to discuss the next plan of action.
Cmt can cause problems with your ear, please look up m.neurology.org/content/84/.... It can also cause a lot of other problems that a lot of people are unaware of, do more research. So many doctors are unaware of the extent what cmt can do to a person that has it and give false information to patients, unfortunately it is up to us (cmt individuals) to do are own reaserch
As John said, hearing loss is not related to CMT, except in one or two very rare types. The issue is - hearing loss is really common in the population, so it's not uncommon for people to have both.
The other problems you mention - dizziness, dry mouth, blurred vision etc are also not likely to be related.
Tinnitus can be associated with another neurological condition called Ménière's disease - which can cause hearing loss and severe dizziness - perhaps you have this, as well? It's maybe worth asking about.
I recently had an MRI scan in London under the care of Mary Reilly to look at the nerve thickening in the brain and spinal cord. The results showed that I had thickening of the cranial nerves which is casing me to have hemifacial spasm and trigeminal neuralgia and also the auditory nerve is the same causing me hearing loss ad continuous tinnitus. I have autosomal recessive CMT but no gene identified yet.
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