Sunday, January 8, 2012
HOW IT ALL BEGAN......
In July of 2010 I experienced an vision loss in the center of my field of vision that lasted about 15-20 minutes. I went immediately to my eye doctor and he did a good exam saying nothing looked wrong to him. I then went to my Primary Care Physician, and we decided to not do anything more at that time but if I were to experience another episode we would explore further avenues.
In early October I started to get tingling and numbness in the smallest 2 fingers of each hand. Then weakness in both forearms started and I was having trouble turning things (keys, doorknobs, etc.) and writing so I thought I would go to my chiropractor. I thought if I had my neck and upper back adjusted, it might be relieved. This was of no help. But he tested my strength and a few other things and didn’t believe the issue was spine-related. He was the first to mention a neurologist.
My legs then (this was now Nov) started to get weak and feel like they were going to buckle out from under me if I wasn’t careful. I called my PCP to order some blood work to be done and we found out I was vitamin B12 and D deficient. Started Vit B12 shots right away and got some Vit B12 sublinguals to take also. I still was getting weaker and fatigued quickly. I then called to try to get in to a neurologist. My PCP suggested a doctor but he had no appointments available until mid-December and I felt I needed to see someone much sooner than that. I was able to get an appointment with another local neurologist. He had me do several tests over the next week. Dr did an upper body nerve conduction test that really surprised him and then had me come back for a lower body test that wasn’t as bad as the upper body. He then wrote scripts for a brain (with contrast) MRI (to see if it was M.S.), EKG, heart monitor for 24 hrs, and an ultrasound of carotid artery. Then insurance said "NO" to the spine MRIs. Waited about week and a half to have doctor try to talk them into it but they still determined that it was "not medically necessary". By then I was continuing to deteriorate so bad that I could hardly function at work or feel comfortable to drive and I was getting so weak I couldn’t do hardly anything without help. I was getting twitches and tremors all over my body and some intense jabs in muscles like a stabbing pain. Also, my husband noticed I wasn’t able to recall things as easily as usual and speaking was both difficult to come up with right words and also to speak them. I noticed a ‘mushy’ feeling in my brain (just not clear). I scheduled an appointment for a second opinion but couldn’t get anything until Dec 13th and still getting weaker. On Nov 30th my fingers (pointer and middle) on my right hand froze and crossed several times as did my middle and ring fingers on my left hand did the same. The next morning I could hardly lift my arms to wash my hair they felt so weak and heavy. That day at work (my last day) I could hardly do anything without just being so exhausted. At that point I went to my PCP and that is when we thought I better get into the hospital to get the tests I needed to figure this all out.
Got admitted to hosp and they started poking, prodding and keeping bodily fluids to test, examine and grow things from. Nothing, nothing, nothing...regular doctor was going to send me home on Saturday but neurologist wanted to try one other test, a spinal tap but had to wait until Monday to do it. That was done and went home to wait. Tuesday got the call that elevated levels of protein were found in my spinal fluid and that he wanted me to see another neurologist in St Petersburg.
Local doc was able to get me in to see him on Friday, Dec 10th. When we went down there I had to have another nerve conduction test (ouch ouch) and then saw the doctor. He told me I have CIDP.
So, doctor immediately started me on 20mg/daily of prednisone (steroid) and requested approval for IVIg. I started the IVIg Jan 10, 2011 and get them every 3 wks. We started weaning me off the steroids in Jan and was off them by March 30th. Still receiving the IVIg every 3 wks but in July I wasn’t finding it being as beneficial as previously. By mid July I was about a weak as I had been in December, so my neuro put me back on steroids again, 10mg/day. Still was extremely weak and only recovering about half as good for only about 7 days between treatments. The middle treatment in July of IVIg was like having nothing done at all. At this point, using a walker due to the weakness was necessary and self care is minimal. Not cooking or cleaning much at all and bathing is a major challenge. When I fell in the shower and broke a few tiles, we had to replace the shower stall area and added hand holds and now I use a shower chair. It is still very difficult to wash myself but I do the best I can since I really don’t want to lose that bit of independence.
So last treatment in July we upped the prednisone to 15mg/day and see where to go from there. I am about mid-treatment time right now and strength is still low and stamina for anything much is poor also. Heat/sun do me in, if I have errands to run I am whipped quickly.