Lukkychrm42 Posted March 20, 2007 Report Share Posted March 20, 2007 So I've just come back from the surgeon, and apparently my description of swallowing difficulty was not in line with that which a patient with MG would experience. It's definitely a newer symptom for me, and apparently it's difficulty initiating the act of swallowing, as opposed to things getting stuck or difficulty with food going down. I notice it more when it's just saliva, and I don't seem to have problems with drinking or food. So does anyone know if this might be a dysaut thing? I know for me it's hard to tell where dysaut ends and something else might begin. Thanks in advance!! Quote Link to comment Share on other sites More sharing options...
Rachel Posted March 20, 2007 Report Share Posted March 20, 2007 I have the same problem just like you described. I'm fine if I have enough food or liquid in my mouth. But if it is just saliva it is hard to swallow. Sometimes it takes 6 tries! I've never mentioned this to a doctor since it hasn't interfered yet with fluid or food intake. So I don't know if it is connected to dysautonomia or not. My guess would be that it is since almost every problem I have is connected to ANS dysfunction. I'm interested to hear what others say too.Rachel Quote Link to comment Share on other sites More sharing options...
wareagle Posted March 20, 2007 Report Share Posted March 20, 2007 Hey guys..I've been trying to think of an answer for you but I can't seem to come up with a good one!! It could be that your mouth/throat are dry when you're not eating or drinking so it's more difficult to initiate the swallow. The weight of a bolus (food/drink) often helps to trigger a swallow so when you have to do it on command it can be hard to initiate sometimes. You can also have problems initiating swallow if you have oral dysphagia which is basically difficulty managing food and liquid in the mouth...sometimes this is caused by mucscle weakness or discorrdination and the inability to move the bolus from front to back...but it doesn't sound like that's an issue for you.It doesn't appear to be harmful as you're able to eat and drink without problems...I know we all carry water with us constantly..so if you feel you have saliva or mucus that you need to swallow maybe use the water to help trigger? Sounds like your doctor is aware of the situation so that's good...just make sure and alert him if you develope any other problems. Quote Link to comment Share on other sites More sharing options...
juliegee Posted March 20, 2007 Report Share Posted March 20, 2007 I, too, have difficulty swallowing when all of my symptoms are flaring. When my motility is bad and I'm really nauseous, it's particularly bad. And, when I'm having lots of episodes of tachy and my POTS is acting up, I also have trouble with swallowing. I'm not sure WHAT it is. I know that the entire GI tract can be affected by a neuropathy due to the autonomic dysfunction- not just the tummy and bowels. I've always attributed it to that. I purposefully stay very calm and relaxed when this occurs as it's rather frightening. Relaxing and "riding it out" seems to help. I'd love to find out more about this.All the best!Julie Quote Link to comment Share on other sites More sharing options...
morgan617 Posted March 21, 2007 Report Share Posted March 21, 2007 I have problems whether I am eating or drinking or not.The initiation of the swallow can be very difficult for me, as though my body has just forgotten how to do it. it's a very bizarre sensation. I have strictures, so stuff gets stuck and i choke a lot, but the swallowing thing is actually a little more bothersome to me. I have no idea why it happens and frankly I just blame everything on OI. I just don't know. A friend is trying to get me to do a swallow eval with a speech therapist, but you know how that goes, it would be a day I'm not having problems...LOL Quote Link to comment Share on other sites More sharing options...
MNsue Posted March 21, 2007 Report Share Posted March 21, 2007 I have had issues with swallowing when my neuropathy is flaring up. In December the left side of my face became numb, but I remember thinking that my swallowing was worse. I started IVIg 3 weeks ago, and have noticed an improvement in my left side and my swallowing. The IVIg was rough. Spinal headaches for 1 week and a fever for 2 weeks. Now that I feel better, I can tell I am stronger. I hope you can get some answers.Rhonda Quote Link to comment Share on other sites More sharing options...
JacobyD Posted April 7, 2007 Report Share Posted April 7, 2007 The inability to instigate a swallow has totally trashed my quality of life. I also have tons of facial, mouth, and throat burning. If I had a real diagnosis (something autoimmune for example) I would try the IVIG treatment. Anything at this point. Ativan worked for about 6 months, but I built up a tolerance and its taken more than two years to ween off the high doses I was on. I'm just one of the unlucky ones when it comes to meds. They either do nothing or make me worse off. Ah, well. I'm sure things will get better. Quote Link to comment Share on other sites More sharing options...
momdi Posted April 9, 2007 Report Share Posted April 9, 2007 My son was hospitalized for a week w/ dehydration, low potassium, and nausea. As those symptoms gradually resolved and they treated the nausea with zofran, he still wasn't able to take in food b/c he wasn't able to swallow - a totally new symptom. They tried some nasty drugs to speed up his motility, when a neurologist finally came up w/ the idea to try mestinon. It worked! It's sometimes used for POTS, but it's primarily for myasthenia gravis. Don't know why or how, but you might want to consider this at a very low dose. I think you try it at 30-60 mg 3x/day, though those w/ MG take hundreds of mgs at a time. Quote Link to comment Share on other sites More sharing options...
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