I am in late 40s, diagnosed with cmt, but I getting forgetting a lot and loss of concentration. Can anybody tell me the worst to come?

[TB5598]

I already have shaking of the hands and problems with my breathing and the doctors and not giving much away, but have said little hints.

[HorshamMalc]

Hi, I'm very sorry you've been diagnosed with CMT, however, the symptoms you describe don't sound like CMT to me (I'm also a CMT sufferer). It's a motor-sensory neuropathy which primarily affects strength in the hands and lower lags. Balance and dexterity suffer but I've not heard of anyone who has bad shakes and certainly not any memory or concentration issues that are due to this particular disease. There might be some other issue the doctors are pinning the CMT label onto, a lot of GPs know very little about CMT and it's symptoms.

I hope you get some answers, best wishes Malcolm.

[Abul_Hassan in reply to HorshamMalc]

I have CMT2A and not only my hands shake, my whole body is also shake. My daughter has also been diagnosed and she also has shaking.

[cleo9]

I agree with the previous comments I also have CMT 1a and what you describe is not like my symptoms , there are of course various other CMT variants , you would do well to speak with your doctor and ask which CMT you have and what the prognosis is.

[BrentonButler]

Hi. I'm 37 and have cmt x. Your symptoms sound very similar to mine. I've had issues since I was a small boy but only got diagnosed 2 years ago, and now my cmt is quite sever. I also have tremors / shaking in my hands depending on if I'm on a 'good day ' or not. I've also have breathing issues but mainly at night and now have to use a cpap machine to support my airway. I also have issues forgetting and concentration, my neurologist has said they are not linked to cmt, however with the extra thought I have to put in with basic tasks i.e. walking etc. this could explain that. Search you tube for CMTUnitedKingdom, there are videos on there from the annual conference they have with a fantastic neurologist, whose name escapes me know, which might answer your questions further. Sorry for the long reply.

[REGreen]

Hallo, sorry to hear of your difficulties. There are many different mutations which cause forms of CMT, so one person's symptoms will not necessarily be the same as those of other sufferers. I have Type 2 and so far have not had the extra problems with tremor, memory or breathing. My father had it for many years and did not have these symptoms, but the effort of getting around, the planning involved in accomplishing various tasks and sleep problems can all contribute to fatigue, which may be responsible for concentration lapses.

I do hope you can get some help to make life a little easier,

[John1945]

Hello to TB5598>>>>

Sorry to hear of your recent diagnosis of Cmt: However, you do not mention what type of Cmt you have ? I have Cmt Type 1a, since birth, and I understand that currently there are 8No. different types officially identified: I attached below a description of this Cmt Disease,

IT IS NOT A FATAL DISEASE !

Charcot Marie Tooth Disease (CMT):

At this time there is no known cure. CMT, which is also called by Health Professionals,

>Hereditary: (passed by parent)

>Motor: (nerves that send command signal from brain to muscles)

>Sensory (nerves that send touch/sensations/information to brain) >Neuropathy>(any disease of your Central, or Peripheral Nervous System)

It is a very slowly, and progressively worsening, and ongoing neurological disease : It will not get any better !

It is the most common UK, genetic>(genes) defect: It is an INHERITED gene disorder of the neurological peripheral nervous system>(outwith the bodies Central Nervous System>:(CNS), which is contained within the brain, and spinal column):

It is usually passed from a parent to their 'offsprings'

It has no predilection for any particular race, or sex. The condition causes ongoing, and continuing deterioration of the muscle groups controlled by your peripheral nerves>(nerves near to your skins surface, but outwith of your bodies Central Nervous System>(brain & spine):

Your sensory nerves are sited just below your skin's surfaces, and send information, such as (touch/feelings/sensations) to your brain: The brain then responds and sends instructions, via wave/signals, to the appropriate muscle functions in the hands, forearms, lower legs, and feet, via your MOTOR NERVES>(commands/instructions etc) to respond the information received from your SENSORY NERVES:

Eventually this lead’s to foot problems such as high arches>(pes cavus), and foot drop, weakness, hammer toes, and fatigue: Also many problems with clumsiness, your balance, and weak hand functions, and eventually the loss of your fine figure dexterity, including the loss of all normal reflexes: Balance issues are also a severe ongoing problem:

A demyelinating disease is any disease of the nervous system in which the myelin sheath of the neurons is damaged. This impairs the conduction of signals in the affected nerves, causing impairment in sensation, movement, cognition, or other functions depending on which nerves are involved:

The brain transmits electrical wave impulses to our muscles via our SENSORY>axon/nerves>(information/feelings back TO brain), and also the MOTOR nerves>(command pathways, instructions then back TO your muscle group:

Both of these nerve types are wrapped around in in a "wax-like" MYELIN sheathing which provides the insulation/covering to the nerves, to contain the strength of the electical nerve signals going ("to and from") the brain:

The peripheral nerves are likened to electrical cables, with the axon>(centre core) wrapped in a substance called myelin. If the myelin is damaged and “leaks”, therefore the nerves impulses will be conducted at much SLOWER VELOCIY>(speed) than is usual:

In CMT, the myelin sheathing is defective and “LEAKS” therefore the velocity>(speed), or strength, of the electrical impulses’s, or signals is significantly REDUCED at the receiving muscle group:

Therefore over a very long period of time (lifespan),the lower limb muscles will waste, due to the lack of electrical stimulation, from the motor>(command) nerves, and the sensory>(information) nerves, that convey signals back to the brain:

It is a progressively worsening neurological/neuromuscular disease, causing gradual deterioration of the body's lower limb’s, and muscle groups due to defective/weak motor, and sensory nerve signals: There is no known cure, and is NOT FATAL!

It can also cause pain and fatigue, and occasionally a more severe disability, which may require "wheeled-mobility". It is not life-threatening, and does not affect life expectancy:

Sorry this 'blog' is so long: However always remember that many Doctors, and Health Professionals, will never see one single case of Cmt in their whole medical career, as there is currently only 30,000 registered Cmt patients, out of a UK population of 62 Million>(circa): I reached the age of 58 years before I was finally, and officially diagnosed:

I would also suggest that you join as a member of, Cmt UK (Bournemouth), where you will find, all the answers to your questions, and can exchange information with your fellow Cmt sufferers ! ! !

Best of luck, and good health to you !

John.....

Glasgow.....

[TB5598 in reply to John1945]

Hi John 1945

thank you for your reply and at this time the consultant is still doing tests as the recent symptom to add is drifting off during a conversation although I am aware of the conversation I tend to go into a trance like state as my attention span on any given task is about 8-12 minutes. I am also wearing wrist supports for the tremors and will be fitted with foot/ankle supports in May.

Again thank you for your reply.

[John1945 in reply to TB5598]

Hello again TB5598>>>>>

The only medical professional qualified to diagnose Cmt, and its "sub-type" Cmt 1a etc, is a Consultant Neurologist:

They will arrange a series of tests such as>>>

*Physical examination: Family history:

*A series of blood tests: Sent to a "specialist laboratory", and it can take six weeks to obtain the results?

* Arrange for an Electromyography test, also called a "Nerve Conduction Test" (EMG) to determine exactly what speed test your nerves are sending electrical wave signals between the brain, and your extremities, such as fingers + hands + toes and feet: These extemities are contolled by some of the longest nerves in our body:

*Arrange for a Geneology Consultation:

*Arrange for any Physiotherapy required:

*Arrange for an Occupational Therapist to assess your needs:

*Arrange for an Orthotist to assess, which of your limbs would benefit from a Orthotic Device, created individually to provide support/strength to any weakened limbs, such as ankles /feet/calves/knees/wrists/hands etc:

Tip !

Always make a small list of questions, before your actual consultation, to ensure you get answers to your questions !

Best regards>>>>

John.....

Glasgow....

[TB5598 in reply to John1945]

Hi John 1945

I have had all tests done from a neurologist and genealogist along with emg tests. I start physiotherapy in the first week of May. Also wearing hand/wrist supports to both left and right and being measured for both feet/ankle and calves. My query was about attention span during conversation or trying to watch television/film as I drift of after 8-12 minutes. Before I forget I have had surgery on my left foot/ankle and calve through an orthopedic consultant.

Must thank you John 1945 for your input, which has been most helpful. But as I said I was looking for info regarding brain activity. Also I found out that breathing can be affected regarding the diaphragm, is this true? As while I was having a pre-op assessment for the orthopedic surgery, it was them that picked the lower lobes of the lungs working below normal function by 8%. Again have you had any knowledge of this?

[John1945 in reply to TB5598]

Hello once again to TB5598>>>>>

If you had given us fellow Cmt sufferers the information above in your original question, we could all have "cut-to-the-quick", and given you our individual advice, or expeirence's !

You appear to have so far received 1st class medical attention,and support from your own local health professionals:

In all my years of attending Cmt Annual Conference's, never once has Cmt, and it's various sub-types been linked to any loss of brain fuction: It does not cause dementia, memory loss, or lack of attention span ! Cmt is caused by a mutation in your genes, which cannot be reversed !

[TB5598 in reply to John1945]

Thanks John 1945, as this help's as of late all that I am aware of is that cmt has been confirmed but unsure as to what else they could be looking for??? As the they confirmed cmt so what could be on their minds?

Anyway thanks John1945

[John1945 in reply to TB5598]

Hello to TB5598,

Please always remember that Cmt & all of it's varying (all sub-types), are NOT ! a fatal disease :

Yes, whilst your own damaged, Peripheral Nerves, (sited just below your skins surface's) will send a much REDUCED velocity>(speed) electrical wave signal to your muscles:

Currently, due to a mutation on your inherited genes, there is no cure ?

You personally must adopt a very, and most POSITIVE MENTAL APPROACH:

This is the only positive way FORWARD: You must tell Cmt "sorry Cmy ! but you aint' gonna beat me":

[Barry52]

every 4 months i volunteer at the local clinical school where qualified doctors examine me and must diagnose in order to advance there careers ,I am amazed at the lack of knowledge by doctors re-cmt

[kitbo21]

I have some memory issues and short term memory issues but been told it's me coming to terms with things and have so much going on in my head that I don't remember things, my gullet is slugging due to my CMT which causes swallowing problems and the fatigue is a joke, could sleep for hours and feel no better.. Xx *sluggish not slugging