Hey Guys, I spent some time on this forum last year whilst awaiting diagnosis. My MRI’s brain a c-spine were clear and I went on to recieve a diagnosis of probable Behcet Disease. I have popped back for advice as swallowing/breathing/aspiration problems are not terribly common within Behcet Disease and you are such a warm and friendly gang I suspect you will give me advice where you can. My second “episode/relapse” call it what you will affected my swallowing function. I received help from speech and language therapy and after being relapse free for the last10 months it has stopped being a problem. I recently had another episode and it has depressed my swallowing function worse and I cannot lie flat in bed or i am aspirating my own saliva. Has anyone got any advice? I am having my MRI’s redone, but am really tempted to ask for a lumbar puncture…this is scaring the pants off me…as I said this is not a common feature of Behcet Thanks in anticipation Gill
Does it feel like there’s something in your throat?
No Karina, its like the flap over your wind pipe becomes unstable and you can be eating and food falls down into your windpipe as it is open when it shouldnt. When liquid/saliva is breathed in through your windpipe (Muller light was like acid!) it is almost harder as you cant seem to cough a liquid up or out like you can food. I have gone back to speech and language therapy for more help but they tol me I was presenting to them in the same way as an MS patient so I wondered if any of you had any advice or tips…i find it very upsetting especially if you are eating out Thanks for responding to me Karina you are a lovely bunch xx
No Karina, its like the flap over your wind pipe becomes unstable and you can be eating and food falls down into your windpipe as it is open when it shouldnt. When liquid/saliva is breathed in through your windpipe (Muller light was like acid!) it is almost harder as you cant seem to cough a liquid up or out like you can food. I have gone back to speech and language therapy for more help but they tol me I was presenting to them in the same way as an MS patient so I wondered if any of you had any advice or tips…i find it very upsetting especially if you are eating out Thanks for responding to me Karina you are a lovely bunch xx
It sounds awful. I don’t have any advice but I do know there are loads of downloadable fact sheets under the Resources section on this website and there is definitely one for swallowing problems. That might be worth a look especially if your speech therapist says it is presenting in the same way as an MS patient. The advice must be as relevant to you … I hope it helps.
If you can’t find it, send me a message and I’ll send you the link.
Tracey x
Does it felt like acid coming back up? There’s a few people on here that take acid controlling tablets such as lansoprazole or omeprazole as they’ve had thiga similar and that seemed to help but not sure if this is the same sort or symptom- that’s why I thought I’d check about the feeling of a lump in the throat. It could be worth phoning your ms nurse and seeing if there’s anything you can take to help it or what they recommended. Hope you get the problem sorted - I know any problem like that is horrible. Hugs x