Visited my Neuro last week, and was told that she noticed weakness in my neck muscles, different from my last recheck. I also have noticed in the last few months, weak, sore neck. And at least once or twice per week choking when I swallow my saliva. Then losing my breath, and waiting about 30 seconds to a minute to get my breath back. Neuro is concerned about risk of esophageal pneumonia. My Cidp diagnosis was in April 2010. At Mayo. Mainly affecting my hands, and some feet issues with shocks etc. certainly peaks and valleys. I get ivig every two weeks. Anyone had similar experiences? I work full time and rarely complain. But I’m now very concerned about this. I have been able to adapt with my right side high weakness, but throat and neck??? New one for me. I should mention I’ve been told I have the Lewis-Sumner variant of CIDP. I work a very physical job, and it’s a challenge already, maybe I’m just stubborn and need to think about looking at a different occupation. It is so hard to give up these things. There are days I’m just fine with only a little pain and fatigue, but others that it takes everything in me just to get out of bed and go to work. I’m thankful for my ivig, I have a port as well. Thanks everyone for reading this. I am pretty down right now. I tend to be positive and smiley, but am really feeling alone right now.
I too have neck (cramps/weakness) and swallowing difficulties. Sometimes the throat just clamps shut when I try to swallow, it has been going on for over a year and causes no problems, just embarrassment. I have learned not to turn my head when trying to swallow, no looking to the left nor right, just straight ahead.
Come on now, cheer up Mate you have been this far down this road so don't let it get you down. Cheers
You are not alone Aaron, just a bit lonely at the minute.
I too try and put on as positive a front as possible, even when I feel rubbish.
I work, (I have two kids at University to fund so no choice!), and totally understand how some days are so difficult.
Be gentle on yourself and make the most of any down time.
By reading your blog I now understand why swallowing is sometimes tricky for me, I had been too scared to say anything to anyone.
We who deal with this strange condition learn from each other all the time so in a bizarre way thank you for sharing your concerns.
J Doherty (UK)