Hi all! It’s been a while since I’ve posted a message. For those that dont know me, my name is Barbara I’m 39 years old, i have three children (2 boys) 22, 20, and an 11 year old daughter. I was diagnosed with CIDP in April 2011, and i was recently given a different diagnosis, therefore, I wanted to share my story with my CIDP family
I’ve been getting IVIG treatments for the past year, and the IVIG has helped the disease not to worsen; but, unfortunately, it hasn’t regenerated the nerve damage. I currently have loss of muscle tone, numbness, tingling and severe weakness, and painin my left hand. I drop everything and I’m unable to carry/hold a cup with my left hand. It has also prevented me from doing my work functions…I’m unable to type and my right hand gets easley inflammed because of over compensating due to left hand. I also have weakness in my legs, but, thank God, it has not prevented me from walking. Let me clarfy, as of Jan 2012 I took a leave of absence from work, to focus solely on my health.
In Jan 2012 my neurologist ordered 5 plasmapheresis treatments (it’s very similar to dialysis). Unfortunately, the treatment did not work, therefore, the next course of treatment was steroids!! I was prescribed “Presdnisone” 40mg per day. The steroids gave me horrible side effects, high blood presure, constipation, bloated, depression, insomnia, rapid heart rate, inflammation in the neck, low TSH levels, acid reflux,…and besides all the side effects the steroids did not improve my condition whatsoever…
After five weeks, I went to see the neurologists for a follow up visit and after a thorough evaluation/assessment she determined the steroids were not helping my condition, instead making matters worse. Therefore, due to the two failed treatments (plasmapheresis &steroids) she ordered a new EMG. After reviewing my first EMG, which was done in Apr 2011 and comparing it to my symptoms she considered the idea it might be something other than CIDP…she defitnely knew i had nerve damaged but, was uncertain if it was more related to sensorimotor or motor neuropathy. OMG, what does at mean??? Well, in a nutshell she was leaning towards MMN, which is similar,to CIDP, but different, and it’s treated with IVIG thank God, but, plasma phasmapheresis and steroids do NOT WORK for MMN multifocal motor neuropathy.
I had the EMG, and it confirmed her suspition. The EMG results were abnormal and i was diagnosed with MMN, which is a progressive muscle disorder characterized by muscle weakness in hands and differences from on side Of the body to the other in the specific Muscles involved…that explains why my left side is affected more than the right side. Ok, so now we discussed the treatment plan, Continue with IVIG every 21 days 35gm/day for 2 days…did I mention the treatment takes about 6-7 hours per day, because it can not be administered at any faster than 75ml/hr…and this is because I experienced chest pain and landed in ER when I got infusion for the first time…
Ok, the treatment plan is to continue with the IVIG and to slowly wean off of the prednisone (decrease 5mg every two weeks) and start a chemo drug called cyclophosphamide. The drug is taken orally 150mg per day, 2 in he morning and one in the evening. With the drug you can experience, some of the same side effects as with any chemo drug, however, I don’t think you have hair loss…which at this point it doesn’t matter I just want to feel better and live a normal life with my family.
I started taking the chemo medicine last Wednesday, I’m hopeful that hs medicine helps my condition and God willing I don’t have severe side effects. So far I’ve only experienced rapid heart rate, headaches, lightheaded, frequent urgency to urinate and swelling in the legs.
I will keep everyone posted with my outcome!! Have a good night and God Bless!!!