Reply To: Time of decline

June 21, 2019 at 12:59 pm

One thing I have learned is no two cases are the same and not much is known of the cause or remedy. At 70 years old I was diagnosed in January 2019. This came about after a stroke in May 2018. Prior to this I had been experiencing severe cramps in the legs and constant calf muscle twitching. I was relatively active, hiking 4-6 miles a day, Drs. said drink water, thinking I needed more hydration. I had a real bad episode on a hike that prompted a visit to the Dr. Blood test showed high cholesterol so I started atorvostatin but other than that ok. I quit hiking and started biking 6 miles a day. Then In May I had the stroke. I had a great recovery after angioplasty to remove the clot from my brain. That is when things started to really decline. Pain in the buttocks, ankles weak. MRI showed spot on lung, nothing there after biopsy. Atrial fibrillation was thought to be cause of stoke, implant monitor, still have, it showed nothing. Pain and ankle weakness continued along with numbness and balance issues. Family Dr. referred me to neurologist. Met with neurologists in December 2018 and had nerve conduction test Jan 3 she referred me to a hemotologist/oncologist and had bone marrow sample taken Jan 4, based on the damage indicated on nerve conduction tests. Diagnosis CIDP. Started IVIG 4 sessions a month Jan,Feb,March, no improvement so in April did 4 sessions of Rituxan. Still no improvement, actually getting worse, numbness feet up to hips, and hands. Arms ok, thankfully. Saw hematologists yesterday and I’ll be starting another session of Rituxan, 4 doses. Drs. think the antibodies my blood produces tend to clot and that caused the stroke, at least one question answered. Pain due to numbness is increasing along with discomfort. Going back to see neurologist and am really looking for questions I should be asking and any suggestions for relief from pain. I use a CBD-THC balm which moderates the pain. Tried THC edibles but that only seems to magnify the pain along with increasing the imbalance. That’s my story to this point. It’s a hard adjustment going from an active person to one that everything becomes painful and difficult. Any and all suggestions are appreciated. Can’t have to much information regarding this rare and lightly researched disease.