Hi Julie,

I was reading up on some posts to see if I can find anything to help my father. I saw that you wrote it was difficult to swallow for awhile. My dad has not been able to eat for 5 months now. He was starting to eat soft foods and then got dehydrated so they stopped that. What would you recommend we try and do or tell him what might help him get the swallowing back. I know it will be slowly, but again this is going on 5 months. Thanks for any replies. Kim

I was diagnosed with CIDP in July 2005 (had been increasingly sick for over ten years before that, though– typical!) I didn’t experience trouble swallowing until somewhere around Fall 2006, when I started having trouble– I could clear most of the food from my mouth but pften couldn’t get it [I]all [/I]to go down. Pills especially seemed to get stuck. It felt like I’d lost the ability to swallow HARD.

At the same time, I also experienced bouts where it felt like I couldn’t get enough air, too– and I discovered I wasn’t able to take a deeeeeep breath any more. You know when you breathe in soooo deep, it kinda hurts? I couldn’t– nowhere near, even. A couple nights I woke up gasping, and was developing an aversion to sleep (not knowing if I’d wake UP!) One evening, I even drove myself to the emergency room, but my oxygen saturation rate was fine– apparently while I had the [U]sensation[/U] of not getting enough air, my body had already learned to compensate just fine.

I’d also get the hiccups ([I]severe [/I]ones) during my infusions– and not when I was drinking or eating, they’d come on when I was asleep, nodded off on Benadryl. The nurses saw it happen– and had no idea either. I think now that it was partly infusion-driven, but also partly from impaired swallowing. That’s probably my strangest symptom ever!

All is improving with continued IVIg treatments (yay!), but I still get occasional reminders of both the swallowing and breathing impairment. My neurologist says it’s likely autonomic neuropathy (in addition to my initial diagnosis, peripheral neuropathy.) Demyleination affecting the nerves in areas controlling autonomic functions, such as swallowing, breathing, heartbeat, temperature regulation (check!), metabolism (check!), etc– so, it all made sense, in my case.

I was sent for a swallow test, which showed nothing wrong– but that’s swallowing one huge horse pill that didn’t get stuck THAT time . It was big– and easy to swallow. Why not give me something a bit more challenging– wouldn’t that be more telling?! ) Anyway, my neurologist wasn’t deterred, he still believes it’s from autonomic neuropathy– and I agree. As I said, the IVIg is causing improvement on all counts, but I figured I’d share my version, to help you get a more complete picture. It’s amazing how these illnesses present so differently in each of us– but comforting to know that while I may not have an identical patient-twin out there, I’ve found plenty of other patients for probably every single symptom I’ve experienced… and I’ve got pleny of warning for ones that may show up in the future (thanks, guys!)!

I went to Speech therapy for a while (not for problems with speech, but those are the therapists that address speech, swallowing [I]and [/I]breathing– no one thinks of or seems to know about the latter two, because their title only refers to the speech component– I learn something new every day, don’t you too?) They can help show you some tricks, and exercises to maintain function. I learned to take my pills with a spoonful of pudding (because it’s thicker than water), as an example. So if the problem persists, seeing a speech therapist could help to deal with whatever issues.

Wishing you the best– and a quick, accurate diagnosis, so you can get right to the most appropriate coping skills and/or treatment!