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Hi Ahands,
I did find out that it takes a huge amount of donations to make one treatment possible, so donating for one particular person is out of the question.

Dale City, eh? I know that area quite well. I grew up in Springfield and my husband's only competition in the late 70s went to Woodbridge High School. (My husband and I dated all through high school) Things have really changed around here. If you haven't been back lately, you'll need to take a drive up, but bring a new map. :)

Happy New Year!
Pam B in Va
 
Hi Pam,

Great thread. I somehow missed it until today. Happy New Year to you and your husband and may the treatment/test IVIG, continue to support positive changes for your husband.

For information to others. I get my IVIG every two weeks at home. I will have another EMG/NCV in April to "determine" the amount of effect of IVIG on my body. At this point I am still MMN or "Atypical ALS." My last EMG/NCV was Dec 7, 2006. Subjectively it is hard to tell if I am "getting better" or worse or staying the same. I am definitely less tired after the IVIG. At my visit to the ALS clinic in Aug 2006 it looked more like MMN, at Dec. 20 visit, it looked more like ALS, hence the need for another EMG. Whatever I have she said it is super slow and will take "decades" to do me in. My symptoms began in 2002, I am positive EMG in 3 limbs for ALS and have no GM1 issues. According to the internet 80% of the people with MNN have GM1 issues. That leaves 20% who don't. So I remain hopeful and grateful. Respectfully, Peg
 
Hi Peg,
Happy New Year!

Eric is very similar to you in that he did not have the GM1, he had a positive EMG in all 4 limbs, no conduction block, no Babinski's sign, no brisk reflexes, so he is either MMN or atypical ALS. His doctors have also said that whatever this is it is slow moving, so that is a good thing. :) His doctor wants him to do the IVIg one more time in February and then go back to UVA in April to see if he has had any changes. This makes him so sick that he questions whether he should keep doing the treatments. Also, like you, he has more energy afterward. Again, it seems like his arm has grown a little bit, which really gets me excited, but then after a few weeks it goes back down in size. Kind of strange.

I want to wish everyone on the forum a healthy and happy New Year!
Pam B in Va
 
I go back in two weeks to get my blood, emg/ncs and ct scan results and am hoping the blood tests will show positive for the anti-gm antibodies. thanks to you all for giving me that hope! i asked the latest neurologist (#5) about ivig and he said yeah, go for it if you get the gm1. sure, i said, but what if the gm1 test does not indicate for it? oh, i seriousy doubt they'll let you have ivig without it.

it sounds like the two of y'all have gotten ivig without gm1 indication. whats the downside of ivig? i suppose expense is one--$1000/dose and doses are what...1 per month? if one sees improvement after the 1st administration, but not after subsequent...maybe it makes sense to stop and try again in 6mos or a year? insurance is covering my riluzole, maybe ivig too or instead of riluzole.

for those who experienced positive results after 1st treatment but not subsequent--does that mean after the 2nd treatment things remained the same or relapsed?
 
Hi Ahands,

The cost is 10,000 dollars a dose. I get it every two weeks and my insurance pays for it. It must be like kidney transplants in that the gov or someone chips in. I do not pay out of pocket and I started last Jan (07). Wow! Tons of money. They told me at the ALS clinic that individuals do not pay for it. I don't ask too many questions re: cost. I do know that the person who schedules my treatment is in PA and I live in MI. I have been told there are only 4 nurses in Mich. who do home treatments and they travel all over. What a blessing to get it at home. The other downside is side effects. I got heavy flu symptoms the first time but a does of liquid prednosone, and a few other meds before treatment take care of it. I sleep for 6 hours with my dog at my feet and eat cookies whenever I wake up. For some reason I crave the indulgence:-D. So it is not much of a downside on that part.

As far as results I could not move my baby finger at all in Sept.. 06. After treatment I could move it to the right but not to the left. I am not as tired at all but get more tired as it gets closer to treatment time. However, another finger is beginning to curl and I still cannot write very well, as my strength has not returnede. We will see what the EMG says i April. It is true though that neither Eric nor I are positive for GM1. Most but not all, are positive for GM1, but some do not get IVIG as it does not help them, but they still have MMN and not ALS. MMN is also progressive but much much slower. IVIG does not stop the underlying progress but slows the process and treats the symptoms. At least that is my understanding. I wish you the best. Please keep us updated on what happens with you. Sincerely, Peg
 
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OK, Thanks for the info...
Counting the days until, and gathering questions for, my next appointment...
 
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