Hi and welcome to our little corner of the web. This place is full of wonderfully informed people and I know they would be happy to discuss their own experiences. That said, I'm trying hard to remember anyone here having a similar problem. We have only talking about bulblar affect problems a few times because we don't seem to have people affected they way.
I'm sorry this has happened and is so serious for you. Have you had problems with swallowing for a while or is this something new?
welcome again, and I hope we will see you around some more.
Hi and welcome to our little MS community! Over the years we have had a small number of community members, that have had issues with recurring pneumonia, a small number with verbal speech and 'or' swollowing issues. Though again there isn't many and not necessarily has pneumonia been an exclusive issue for the ones with swollowing or speech difficulties.
Sometimes the reason hasnt been associated with anything specific but the main theme, when it has been identified, seems to be asperating food or liquid into their lungs. In truth i can't recall anyone specifically mentioning bulbar deficits or a continued repeat of the problem, once they're had specific instructions on minimising the issue, using swollowing techniques etc. I thought bulbar deficits where associated with motor neuro disease and not so much an issue for MS, though i could be wrong.
I do have speech issues, chewing problems too but i'm thinking its relating to muscle fatigue because the more I talk the worse my speech, the more I chew the less oral control i have. Ok not sure how it works but fatigue in general seems to affect my speech etc, as well lol often i'm just too tierd to chew.
Apart from the pneumonia, what other bulbar deficit sx are you having, for them to be thinking bulbar?
Thanks for your response. The bulbar deficits I have are weakness on one side of my face which affects swallowing,eating,, speech, vision, salivation & breathing. It's pretty nasty so I am desperately hoping it isn't bulbar palsy as the neurologist is saying. I am getting recurring aspiration pneumonia. The most recent incidence of which became life threatening when I also developed hypersensitivity pneumonitis because of an allergy to piperacillin/tazosin. I'm waiting to see the professor of neurology who knows me well to confirm whether or not I do have bulbar palsy. Am glad to have found this forum.
Yes, have had problems with swallowing for a while & it has caused aspiration pneumonia several times.But, the most recent attack was by far the worst because I had an allergic reaction to the iv antibiotics (piperacillin/tazosin) which caused hypersensitivity pneumonitis. I know I've had bulbar deficits for a long time but they seem to have got a lot worse, hence the suggestion of bulbar palsy. I'm v glad to have found this forum & appreciate hugely your response. It's just after 11am here in the UK & beautiful sunny day. Have a v good day yourself!
Hi, and Welcome!
Have you had physical therapy for swallowing? There is such a thing, and they can help you get a hold of the steps in swallowing, and the easiest way to manage it. For myself, when I occasionally go through these bouts, I don't talk while I'm eating, I tilt my head down, and tilted slightly to the left when swallowing.
Good luck to you!
That's helpful - I have seen a v good speech therapist who gave me the same practical suggestions. For a while I had an ng tube while the pneumonia was being actively treated. Now I'm home I'm managing fairly well on a "fork mashable" diet &drinks that are thickened. I'm waiting to see my neurologist to confirm whether or not I do have bulbar palsy. His registrar thinks I do but I trust my consultant more because I've been with him since dx in 81. Thank you for your post.
Thank you everyone for your responses about recurring pneumonia &bulbar deficits. I have another query about steroids. Because the pneumonia was complicated by an allergic reaction to the iv antibiotic (piperacillin) I was given iv hydrocortisone @ gram a day for 17 days & am now being weaned off prednisolone 5mg a week. I have never had that much hydrocortisone before & am worried about the side effects. I'm ravenously hungry all the time and getting bigger by the day! Any advice on how to manage this would be most welcome. Thanks a million, Elizabeth
that urge to eat is horrible and I don't know any trick to resist - it just takes tons of willpower and restraint. Can you get all the crappy food out of your way and replace it with low calorie items? I know, there is nothing to compare with a fresh cookie but you might give that a try.
Coming off the prednisone should help, but I'm not sure how long it takes.
see you around,
PS when you have a new question you might want to start a new post so people are sure to see it!