Hello, Boy and Girls!
I have been with the wonders of CIDP for quite some time unfortunately, however, when I was at my lowest point which was a few years back now I managed to motivate myself into exercise. At first it hardly felt worth doing, being an avid rugby player prior inhibiting the illness I was hit pretty hard, I was barely able to lift a dumbbell. Nevertheless I persisted with it, and I realise everyone with this illness receives a different degree of body terrorism as it strikes, yet exercising very much brought me from the depths of despair. It wouldn't be unfair for me to suggest that at age 15 I was very much knocking on deaths door. With persistence and motivation to get me back to me I am currently sat the best I have ever been having not received IVIG in 7 months. A huge step up from the 5 daily emissions I received 3 or so years ago. It will take time and it wont feel worth doing and somedays it wont be possible, your body is punishing you and now its time for you to punish it. I hope this helps some people. Keeping believing, forever stay strong you are not alone :) x
Thank you…we are struggling with being hopefull and you have helped…Madonna
Thanks Jeff and your most welcome Madonnart! Keep smiling. I cant empathise totally to either of you unfortunately, but things will get better, 70% of the battle is dominated in the mind. Its the only available place to seek release when your body isn't behaving.
Take care im sure we shall meet once more! Or feel free to message further if you have any general worries or concerns.
Well I went to see my Neurologist yesterday and had an EMG prior to seeing him. The results were not good so now I'm getting my IVIG every three weeks instead of four, which I hope helps especially with my sleeping. My neuro stated it was time to change from a maintenance dose to a custom dosage. Predisone and Gabapentin will not change for now, and I see no need. I have faith in my body and my doctor, so I'll let you know how it goes. Gary
That's great news Gary on the faith front! I was on the same treatment without the Gabapentin. Just the IVIG and Steroid. I unfortunately happened to keep getting worse until I was in hospital every few days getting IVIG. So if that does happen do not fear it can and will turn around. Keep me updated. Best Wishes
This is one frustrating disease. I have a lot of faith in IVIG over time…D is just about to see Internist to go on Prednisone for 3 months. It has never been tried because of his diabetes. D is very worried about it and how it will affect BS and insulin…always a challenge in this journey. Sending you light and prayers, please keep us posted on how you are improving…M and D