I just been diagnosed in a respiratory critical unit setting with BULBAR PALSY after having speech swallowing problems and with ongoing respiratory complications .. I’m not even 38...
My neurologist still in denial or plain LIEING TO MY FACE.
I just googled BULBAR PALSY and describes my symptoms for the last six months... it says that there’s only three years left to live from when it’s diagnosed ! WHAT IS GOING ON ???
I had a CT scan of my neck and head three weeks ago, I don’t even know why they wanted I didn’t know and they didn’t want to tell me until the doctor talks to me ... WHY ALL THIS SECRECY !??!
Bless your heart. I believe this is the time to get a second opinion. This is too serious not to.
I have swallowing & speech problems with my type 1a, my neurologist agreed with me after excluding everything else, but he didn't write that in his report to my GP making support at work, should I need it on this issue, more difficult.
why don't dr's want to admit this is happening?
They know more than they want us to be aware but why ?!
After I was in a&e had huge interest there and out going to appointments doing tests I don’t know why and the results but I’m too afraid to ask because I’ve tried and it was like “I’m in a rush to go be somewhere” the results aren’t being DISCLOSED DIRECTLY TO ME! I just read Hospital discharge notes saying all this stuff about POOR BULBAR FUNCTION I had to google this stuff that’s written in my Hospital discharge notes I need ADVICE and INFORMATION from professional and they just send me home expecting me to adapt on my own ?
And yeh I had my neurologist thrown on my face that my phrenic nerve palsy and vocal fold palsy is part of CMT just out of the blue after putting him on the spot in front of 4 colleagues, and walked away.
And now recently I learned I got BULBAR FUNCTION Affected by cmt also from only reading the discharge hospital letters from when I was in the respiratory critical unit the other day...
I can’t plan my life I can’t guarantee I won’t get worse a year from now or that if I’m dyeing, how long have I got..
It’s so Cruel what I’m being made to go through either consciously or unconsciously.
My eldest son frequently coughs on thin fluids and solids. Both my sons stutter. My GP says CMT only affects peripheral nerves , so it can't affect their speech. He says he doesn't mind if I explore - I'm sceptical - my breathing is becoming more laboured. My sons are 20 and 22, I'm 50 and all of us have CMT Type 2 - interesting
I don’t like to get involved in giving advice on cmt as fear of Not being the same etc, but the swallowing fluids and types of foods does risk aspiration and choking on the coughing it happened to me had gone to a&e Hospital now I take it seriously and eat soft diet puree feels harder to push it down and it gets stuck around in holes or in lumbs, speech therapists put me on thickener to use with fluids also as puréed food diet, of course I didn’t sometimes followed their advice but by not doing as they told me I went on a coughing fit felt chocking trying to swallow down, I was glad I threw up the food and some got on the back of my throat, my cough is bad is very poor I go on for ages coughing I tire myself out I had cough assist machine helping me my lungs had so much muck around that I was luckily I didn’t get another infection from it. Aspiration from poor bad swallowing is very critical you’ll end up in hospital with serious infections.
Be aware of eating drinking, I used technique that now no longer works.
CMT does affect the peripheral nerves, but it can also affect the cranial nerves. And in rare cases it can affect the phrenic nerve which is involved with breathing. I know my 7th cranial nerve and possibly 5th are affected by CMT (which causes facial spasms and sometimes facial pain). I did a quick google search on "phrenic nerve CMT" and "swallowing CMT". I found out 6 cranial nerves are involved in the swallowing process! So in my opinion swallowing can be affected by CMT in some people. I know that I have swallowing problems from time to time.
CMT is a NEURO MUSCULAR DISEASE THAT PROGRESSIVELY DAMAGES NERVES AND WASTES MUSCLES... that is what we have, it’s very very serious disease of the nerves and muscles we should not underestimate CMT.
My cmt type symptoms and tests results are looking more and more similar to motor neurone... I’m very worried they know this but because they cannot officially tell a cmt sufferer I’m wasting away . I’m sorry putting it so bluntly .
My gp told me yesterday that I can have a device in my neck inserted to able me to speak or with a computer also a ventilator will give me quality of life etc. They know exactly What CMT patients with severe symptoms will go through until it’s really too much... I know I’ve been strong but I find myself losing control over this, I’ve pushed family and friends away and now all I think about is to push the world away also, how can I explain what’s happening to me.
I am so sorry your symptoms are so severe. It must be very discouraging not to feel the support of your doctor. I would encourage you to take one day at a time. Do you have at least one family member or friend who can be there for you and encourage you during this time? If so, it is important for you to reach out to them and ask them if they can be a "listening ear". Don't give up. We are here to listen and offer emotional support. Although some of us have mild symptoms and others have more serious symptoms, we all live with the knowledge that this is a progressive disease. The unknown is how quickly it will progress and in what areas of the body will it affect. I don't think any doctor really knows the answers since it is so individual for each of us.
Medical!! Has anyone kept their benefit?
Speech Problems with Type 1A CMT
is there anyone who has cmt and can walk in heels
Feeling Devestated and Low