Welcome to our forum!
🙂 Hello Karen!
Reading you short summary of your trials and tribulations sure rings a lot of bells with me.
My GP also told me there were so many aches and pains people just had to endure when my legs had become unbearable painful all the time and the rest of my body now and then.
The trigger of my illness, I’m quite convinced, is STRESS, among other factors because of an immunologist’s explanation of how STRESS influences the immune system. I have never really been depressed, but it is far from uncommon among people with the related illnesses GBS\CIDP\PDN. My stress was living with anxiety for quite a number of years.
You don’t mention seeing a neurologist on a regular basis, but try to get a doctor test your IgM level. IgM is an antigen, a part of your immune system, and as you probably know, all the above-mentioned illnesses are auto immune diseases. I have the PDN variety which is caused by a flaw in the IgM combined with an over-production of it. IVIG does not help much for this condition, and since stress seems to play an important role in the development of your disease, I think the IgM question might be something to look into.
I’m having jerking motions too, but of a different kind from yours. Mine are called “intention tremors”, and I have them in all parts of my upper limbs when I use them, not when they are relaxed. Perhaps others recognise the kind of jerks that you suffer from.
I received Rituxan treatment a year ago, and have had a slow but fairly steady improvement since then.
I and many others will be happy to give you all the answers we are capable of, so keep on posting.
Hope this may be of any help and comfort, Karen!;)
All the best from