crstr
New member
- Joined
- Jul 9, 2010
- Messages
- 2
- Diagnosis
- 01/2006
- Country
- US
- State
- MI
- City
- Grand Rapids
Hi Friends,
This is my first post in this forum. There seems to be a fairly regular upkeep here which is really a positive thing.
I was diagnosed in 2005 with MMN with conduction block at Mayo Clinic in Rochester and have been on IVIG treatments ever since. Right now I go every other week and get .4g/k.
I recently had to have a third surgery on my left knee. The first two were in 2007...one was a replacement, the second a revision because of looseness, and the third was just in sept. and was a revision in which a different surgeon replaced the entire replacement. My joints are very loose and the new knee does not rely on my body to keep it tight. No MMN problems after the first two surgeries, but my symptoms have increased markedly after this latest one. I now have left foot drop, the left thigh muscle is much weaker, and my hands, the right one especially, is much weaker.
My Mayo doctor said that this is very rare. I will be going to Mayo in January for a round of testing and then my ivig will most probably be increased....according to the doctor.
I went to my neurologist here in Michigan and his physical exam showed the weakness greatly increased. He would raise my ivig now to 3 weeks on and 1 off:sad: I am not happy about spending so much time "hooked up". Every other week seems like it comes up soooo fast now. I sure don't relish every Monday (with 1 monday off).
My symptoms had been fairly steady until about 6 months ago when the weakness/tiredness seemed to start increasing more noticably. Then I had the knee surgery and my body really objected. I think my new knee is the strongest part of me now.
I just turned 65 and have also now found that, whereas my ivig was totally covered before, I now have to pay $70 each time. This could get tough if they won't increase the dose, only the amount of times I go.
I seem to be rattling on. This whole picture may change when I get to Mayo.
Thank you for listening to me.:smile:
Take care of you,
Christine
This is my first post in this forum. There seems to be a fairly regular upkeep here which is really a positive thing.
I was diagnosed in 2005 with MMN with conduction block at Mayo Clinic in Rochester and have been on IVIG treatments ever since. Right now I go every other week and get .4g/k.
I recently had to have a third surgery on my left knee. The first two were in 2007...one was a replacement, the second a revision because of looseness, and the third was just in sept. and was a revision in which a different surgeon replaced the entire replacement. My joints are very loose and the new knee does not rely on my body to keep it tight. No MMN problems after the first two surgeries, but my symptoms have increased markedly after this latest one. I now have left foot drop, the left thigh muscle is much weaker, and my hands, the right one especially, is much weaker.
My Mayo doctor said that this is very rare. I will be going to Mayo in January for a round of testing and then my ivig will most probably be increased....according to the doctor.
I went to my neurologist here in Michigan and his physical exam showed the weakness greatly increased. He would raise my ivig now to 3 weeks on and 1 off:sad: I am not happy about spending so much time "hooked up". Every other week seems like it comes up soooo fast now. I sure don't relish every Monday (with 1 monday off).
My symptoms had been fairly steady until about 6 months ago when the weakness/tiredness seemed to start increasing more noticably. Then I had the knee surgery and my body really objected. I think my new knee is the strongest part of me now.
I just turned 65 and have also now found that, whereas my ivig was totally covered before, I now have to pay $70 each time. This could get tough if they won't increase the dose, only the amount of times I go.
I seem to be rattling on. This whole picture may change when I get to Mayo.
Thank you for listening to me.:smile:
Take care of you,
Christine