AnonymousSeptember 22, 2011 at 10:08 pm
Hi everyone. It has been a while since I last posted. I knew that I had CIDP because of my symptoms, tests etc., but I had been diagnosed with Chronic Multifocal Motor Neuropathy early this year. I had an office visit with my neuro muscular specialist Dr. yesterday and she changed the diagnosis to CIDP. I have been getting IVIg every four weeks starting in March. I wasn’t really worried about the diagnosis (though I knew it had to change eventually) because I was getting IVIg. I thought I would have to get the nerve biopsy to get the diagnosis so I was thrilled yesterday afternoon to get the official word. The only thing I don’t like is that she had me set the IVIg up for every three weeks. It is really tough on me with a lot more extra extreme exhaustion. I don’t have any other major syptoms from it though so I am willing but reluctant to go through with more frequent IVIg. I am on long term disability through a private insurance company and have applied for Social Security. I broke my back in May, (burst, compression fracture, L2) as the result of falling down basement steps at my inlaws. I have largely healed from that although I still have some pain as a result. I also have a lot of neck and shoulder pain as well as pain from problems with my lumbar spine which I had befire I took the fall. I have a new issue with my heart which is operating at 40% instead of the optimum 60%. This is on top of the pain I get from my legs, arms face and bad muscle cramps in various parts of my body. The neuro exams have shown increased strength in my limbs although that wears off about 2 1/2 or three weeks after the infusions. That is why my Dr. wants me to get ot every 3 weeks. My wife and I moved out of our 2 bedroom house into an apartment with three bedrooms all on one floor which is a lot safer. Also there is no basement steps that I have to go down. I use a cane to get around the house but I normally use a walker to go somewhere where I know I’ll be on my feet for more than a few minutes. I take oxycodone for pain and neurontin and I have begun to take the generic version of prosac for depression which I realized I had recently. I am struggling with all this more so lately. I was more positive before but it is beginning to wear me down. I know I am blessed though and I am grateful for many things. God bless you all and thanks for being part of this forum.
AnonymousSeptember 22, 2011 at 10:27 pm
I know you say you are reluctant to move your IVIG treatments to every 3 weeks but it sounds to me like you may need it even more often than that.
The thought is you want your next treatment to start BEFORE you start to notice you are going downhill. The attack on your myelin starts before you notice anything. You want the IVIG before that happens so you can regain as much mobility as possible.
If you don’t want to try more frequent IVIG maybe you should discuss adding other options to your treatment plan, like plasma exchange.
What brand of IVIG are you currently getting?
AnonymousSeptember 23, 2011 at 6:44 am
Thanks for your reply. I remember you from before in the forum as being an extremely thougutful and intelligent person. Excuse some of my grammatical errors. They are usually typos. I get gammaguard but there was a time or two the first few times where I had gammunex. The nurses say that everyone gets the same brand. I go to a University hospital to get it. I forget if it was you or someone else but I recall that someone conveyed months ago that gammunex was better and people were less likely to have problems with it. I am defiitely going to go ahead with the IVIg like they have it now set up, every three weeks. I figure more frequently might change my condition so much for the better that I should go along with it. I appreciate your insight.
AnonymousSeptember 23, 2011 at 1:08 pm
You say that getting IVIG every 4 weeks enables you to walk with a walker outside the home, a cane in the home. Any foot drop or loss of the use of your hands? How bad were you at your worst, before getting IVIG. I was just trying to figure out exactly what you are getting from the IVIG, & that might make me understand better why your doctor is ordering it more frequently.
AnonymousSeptember 23, 2011 at 2:23 pm
Thanks for your reply. I was falling down just about every day at the worst before the IVIg. I broke my ribs two years ago on Easter morning getting up to go to the bathroom in the early AM. I had left foot drop consisently before the IVIg. I have had it sporadically since starting IVIg. After I broke my back, foot drop developed with both feet. I had to stop physical therapy for about 10 weeks. I have gone back to PT since then. My hands are bad, I drop things and have trouble holding something for very long, especially when I have to curl my fingers to do so. I do wake up somewhat frequently in the middle of the night or morning with a severe pain in my left shoulder usually and the pain goes all the way down my arm and shoots out my fingers. I have recently had epidural injections in my cervical and lumbar spine for some additional help with the pain. I do seem to get a burst of energy about a week after the IVIg, the physical strength increases prior to the more extreme exhaustion ending. The burst of energy in combination with the incresed strength allows me to walk better and stay on my feet longer(still with a walker) for several minutes longer when I am out at a store shopping with my wife. There are times, about every three weeks or so when I either fall down or simply fall asleep and I can’t get up for a period of time because I am so exhausted and have muscle weakness. At our home that we just moved out of my wife had a terrible time getting me upstairs to go to bed. I neglected to say that we did ask and receive from my doctor a prescription for a lightweight wheelchair in part due to not being able to walk on occassion and also because my new physical therapist said that if I thought I would need one soon I better take the steps to get one becasue it would take months to obtain it. I would appreciate any insight you would care to offer.
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