I was wondering if some of you could comment on how long after diagnosis it took for you get get to baseline. Then, what are your deficits at baseline? Thanks a bunch. Trying to get an idea of what we are in for. My husband was afflicted on October 27.
Well, I was first diagnosed with GBS, which is not unusual. I was treated with 5 days of IVIG, and after that was pretty much back to normal - I would say, 90% of normal strength. However, after about two months I began to have weakness again. My doctor tried me on just Prednisone this time, but that was not effective, and I continued to get weaker. Eventually, I wound up in the hospital again, this time completely unable to walk. I was treated with plasmapheresis this time, because I was away from home at the time, and that was the preferred treatment at the hospital where I was taken. That worked, but did not last nearly as long, and I wound up back in the hospital again. This time, my doctor told me that I was going to require IVIG every three weeks, indefinitely.
After getting out of the hospital the third time, I was much weaker, to the point that it was very difficult to walk up stairs, or even to go for a short walk on level streets in the neighborhood. It took me several months to get back to some sort of stable condition again. I would feel the symptoms coming on so quickly that a couple of times I moved up my IVIG treatment to even less than three weeks.
But, gradually, the IVIG seemed to get things under control. After about six months I was pretty stable, in the sense that my strength was not constantly crashing. But, even though I was stable, I was even weaker than after the first round. I would say at that point I was at about 50 or 60% of normal strength. I would get fatigued very quickly, and had no energy.
That was about a year ago. Since then I have been able to stretch out the interval between IVIG treatments to six weeks. My strength has gradually improved, and I have started going to the gym, to try to build up my muscle strength again. My endurance is better, but I still tend to sleep at least 9 hours a night, more if I exert myself.
As for other deficits: I have been pretty fortunate with pain. I had fairly severe pain in my legs early on, but that pretty much went away with the first treatments. Now I have a more-or-less continuous dull ache in my lower legs and feet, but I hardly even notice it any longer. My feet still feel somewhat numb and tingly, but it is not a problem. My biggest issue is still with fatigue - I still get quite tired after a 30 minute workout at the gym, or a hour or so of work around the house or yard.
I guess my message is that it is hard to define what 'baseline' means. There are so many aspects to this, and everyone seems to respond differently. I think a lot depends on how soon you were diagnosed, and how fast your treatment was started. Also, some cases seem to be more severe than others. According to my doctor, mine was pretty bad, but I have met others who had worse problems than me. So, you might feel that you are back to baseline after a few months, or it might take a year, or even longer.
Just don't give up! Keep fighting, and insist on getting good treatment. Read all that you can, and question your doctor if you are not happy with how things are going.
In my case...at the time of diagnosis in 1997 I was very mobile and only experienced mild leg weakness. I have never experienced any pain. The leg weakness translated to some tripping and falling and not being able to stand up from a squat. After my first IVIG (right after being diagnosed) I could stand up from a squat without assistance (within maybe 1-2 week of the treatment). I have been getting IVIG ever since (currently every 3 weeks).
In 1998, I had an acute incident that I attribute to tapering too fast (for my system) off of oral prednisone that I was given for poison ivy. I became so week that I was spontaneously falling and needed a cane. I went back on oral prednisone and continued regular IVIG. It took maybe 6 months to return to normal (which might have been 80% of my pre-diagnosis strength). [I stopped taking oral prednisone maybe 2 years later]. Since then I have very gradually gotten weaker. There are times right before my IVIG when I have to take stairs one step at a time (always leading with my stronger leg). After the IVIG, I return to maybe 60% of pre-diagnosis leg strength. Last spring, I spent a week in California with my brother. We would hike and/or kayak daily. I could hike up to 6-7 miles without much problem. One hike was 8 miles and turned out to be my absolute limit. In my case, I try and religiously keep up with a solid schedule of IVIG treatments. I don't want to get so weak that my nerves are at a higher risk of sustaining axonal damage.
I also make sure to get a flu shot every year. I found out early on that the flu makes me very weak.
I think many of us are still in work to get to baseline. I know I am. I hope to come back with a positive input in about a year.
I am new to CIDP and trying to find out as much as possible for my son who has been diagnosed for about six months. Can you tell me what is meant by getting a baseline please. Thanks