Hi, can anyone advise me, my husband who has CMT diagnosed three months ago after EMG and blood tests, still waiting for DNA results ! and originally misdiagnosed with MND, he is constantly clearing his throat, this has gone on for some weeks now, it is interfering with his sleep, normally a good sleeper. Also his hand keeps locking, are these bith symptons of CMT ! Thank you Pam
Throat clearing !: Hi, can anyone... - Charcot-Marie-Too...
They are not symptoms that I am familiar with although the symptoms do vary a lot, even within families, and will depend on which type of CMT your husband has. Clawed hands (fingers curling inward) is a common problem, but I've not heard of hands 'locking'.
Hello there I wanted to ask what types of blood tests were available for CMT type 2 thank you
My husband had EMG test and DNA test to identify type for which he is still waiting results.
My hand locks up a lot too, I think that is CMT. I have just recently began having problems with swallowing & speech, my consultant wasn't sure if it was CMT or not, so he arranged for me to have a camera put down my nose & oesophagus to rule out any other causes and said he will see me if it carries on.
Swallowing and speech problems also recently had camera down nose and throat/mouth... Vocal cord paralysis for no reason other than CMT affecting those nerves , also I’m constantly trying to clear out throat like as if I got something on the top lumps or something keeps bothering me eating is very difficult I just had Aspiration Pneumonia.
I'm 30 and have severe CMT. Haven't been able to walk for 13 years now. I have a paralysed vocal cord and am always clearing my throat. I find coughing very strenuous too.
IHi Elizabeth, it is a cruel disease you never know what's coming next, I am still hoping my husband has a sore throat and it is nothing to do with CMT but as he can hardly talk and no gargle seems to work, and the throat clearing is getting worse and keeping him awake at night as well now I am beginning to think it is CMT related. Pam
ElizabethgWilliam, I have the same haven’t been able to walk for 17 years no movement in my toes no movement in my feet no movement in my lower legs just about manage to throw them around with my hips no sensations just tiggling numbing burning with a painful electric wave, can’t describe it well, vocal cord paralysis as well trouble with throat clearing swallowing and eating too, I had tomato soup earlier and I’m still bloated my diaphragm looks distorted I just don’t know it’s so much pressure on my upper body chest area to breath talk eat drink it’s too much workout for these muscles it tired me out that if I try to talk I’m slurring my words look drowsy fatigued I’m told to stop and rest or to stop talking and rest.. I’m seeing tomorrow a speech therapist again because I keep having Aspiration pneumonia I just had one but apparently wasn’t the first time, I have refused a PEG, I have refused a cpap machine but I’m struggling and Its obviously puts more strain on the muscles if the nerves aren’t working well as it is, I had a call this afternoon to see my neurologist next week, I just got out of a&e Hospital nearly two weeks ago, typing takes ages my carers help me but it’s not the same everytime I do the same thing it seems to be more of a struggle than the previous times I’m getting fed up
yes my hand s and fingers lock[seems to be of and on ].not very good when you have hot cup of tea in your hand. I'm always clearing my throat ,especially when iv been talking.this is getting worse.i have c.m.t.1.a.
It is hard, not knowing what might be affected next, I am beginning to think it is CMT related and not just a sore throat. Take care x
yes i think your right. but it seems fat lot of good telling doc they just seem to dismiss any thing connected when i mention c.m.t.. i think because they don't know much about it.seems that the easy way out for them ....just dismiss it or pretend they did nt hear what i said.
Throat clearing appears to also be a symptom or part of Hypothyroidism. Many say they feel as though there is mucus stuck there, hence the throat clearing. I have HypoThyroiditis (Hashimoto's being the name for the Autoimmune type of it).
I also have CMT - despite only being tested for Diabetes Mellitus -which was negative - plus my requests, my GP won't test for CMT! I've had 3 corrective surgeries for bone deformity in R foot over several decades. Ortho has seen my now deforming toe joints onLfoot and said wont operate, instead I've had to have orthotics measure and make shoes with mounded insoles, allowing for not Normal height of toes and top of feet, which I've just taken possession of 3 days ago. They do help with walking now, but I'm wearing for / weeks before I have to phone dept and report back. If OK a 2nd pair will be made if not - it will be back to the drawing board!
On a daily more recent basis now my hands and finger joints are bending inwards, very stiff and painful, my GP has been saying the swollen joints are RA - im defo not convinced of that, ALL part of a lifelong CMT CONDITION as far as I'm concerned. Till I get the blood tests I've asked for, we'll never Know!
Misspain is correct when she says CMT is a condition GP's don't understand but who knows if that and connection with other Autoimmune conditions are totally misunderstood by the Medical Professon and health researchers in general!
why won't your g.p. test you for c.m.t. can't you ask another doc. ....don't tell me cost.
My fingers lock on occasion and I'm sure this is due to my CMT. I am also constantly clearing my throat especially after eating. Follow this link to a posting a couple of years ago.
Hopefully this will clarify things for you.
I have type 1A.
My hands to lock up also my feet at times always be cautious :/ sometimes medications can cause for throat Clearing such as blood pressure so don't just brush it off as CMT just in case it's more serious!
Hi Hidden, I suggest seeing a gastrointestinal doctor. He/she can do a endoscopy. You are sedated & a tube with camera goes down your esophagus. I found I had a tortuous esophagus, which meant it was like a continual letter S going to my stomach not a straight shot. I have had my esophagus stretched twice. This has improved. The doctor might also order a swallow test. I was choking on certain foods, pills & even sometimes when just talking. This is treatable. Good luck.
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