Bad Weekend, Worried

Hello, I was a work out junkie, I worked out 6days a week. I Was 6’3 260 with 7 percent body fat. At first my left pinkie finger started to tingle, then my feet, this was March of 09. By July I could hardly walk Or pick up my 5 month old son. My Nero was stumped he said all the tests were normal. My emg wasn’t ok though. In October I told The local Neorologist I wanted a second oppinion by this time I had lost 35-40 lbs of lean muscle. I was starting to think i was going nuts. I got my Diag Oct 26 2010 @ Uof M hospital
I started IVIG on halloween and again on the next day, It was called my load dose. I started to see a real benefit In Jan 2010 from the ivig. After that I stopped taking all Meds. I now get IvIg once a month and am down to 80 mg from 100. I Eat very healthy LOts of raw veggies, And again no meds. I am back to almost 100% Of course i cant lift weights like i did before but i have little to no pain and i can jog. IVIG will work for you.. Keep a POSITIVE Mind set..Let nothing hold you back..God bless you…Kyle

JGL,

I do not have CIDP, but I have followed the stories of those on here who have received the Stem Cell Transplant. It is done through Northwestern in Chicago. You have to apply and go through an evaluation process. It is my understanding that you would only be considered if other treatment options were not working or if you have had the disease for a long time. You can go on Northwestern Hospital’s website and there is information on there I believe. The doctor is Dr. Richard Burt. Insurance does not always cover this and it can be $100,000 out of pocket. You can do a search on this forum for stem cell transplants and a lot of threads will come up. Good luck and try to stay strong and hang in there.

Jessica

You asked about immediate poisitive outcomes. I’ll put a few of my dates and results here-

..4/29/08….8/1/08….9/29/08….10/9/08
…….4………..11…………18…………11
…..18………..21…………55………..36

What you are looking at is first, the date; then in Lbs my right hand (top) and left hand grip strength measured by the physical therapists.

In 2008 I did not have any treatments, nor any diagnosis. The M-F preceding Sept 29 was the initial 5 day loading dose.

Positive response? Without question. Did the treating neuro give it any credence? No. Why not? Because I only got 2 days once a month after that and I did not maintain the highest strength. So, he said IVIG was not effective.

Fast forward to 2011 which is one treatment per week, every week.

1/19….1/23…1/26…2/1…2/4…2/8…2/10…2/16…2/26…3/6…3/18
..7.2….. 7………6……..8…….9…..9.5…..8………7…….10…10.6…..11
.38….. 42……..45…..46…..46…..45….48…….44…….52…..52……56

Oh, foowey, the preview won’t maintain my formatting. sigh.

I would point out that the 7.2lbs and the 38lbs on Jan 19 followed 4 months of 3 days once every three weeks. Sounds the same as once per week doesn’t it? Yet, the results would show otherwise.

As for your stem cell transplant questions, call them. You can review the clinical study and get all the info here-

[url]http://www.clinicaltrials.gov/ct2/show/NCT00278629[/url]

my then 9y/o was admitted to the er not able to walk, hold a pencil, button/zipper clothes, difficulty breathing etc. At the time there was a shortage of ivig, so we had to wait 2 days in the picu to get it, but after the fifth day of treatment, he left the hospital runing down the halls, playing xbox and even did some push ups in the hallway to show off. We had an instant response. just a word of caution, everyone responds differently to treatments, you will have to see what works best for you. the first treatment might be in the hospital, probably the doc has already done selective iga deficiency tests etc to see if you are compatible w/ivig. Also, just in case it was not mentioned, if you have diabetes, there are certain ivig products to avoid, those that are stabalized with sugars. Once you have established that you have no adverse reactions to ivig and they determine your next dosing, you could have it done at home. We have the same nurse every two weeks, no problems in the comfort of your own home. Good luck. Things will get better!
Dawn

[QUOTE=jgl]Really bad weekend. I am now not only not able to pick up my son, but am struggling to do the basics like my hair and teeth. Showering takes every effort I have. I dread waking up because I know I struggle through the most basic tasks. It is so damn frustrating. I start IVIG this Wed and keep praying it will be a miracle cure. Is there any change I will start feeling stronger right away. How quickly did this work for you all? Any positives after the first round. I know I won’t be 100% but any better than this would be so nice.

My parents are so worried my dad is ready to sign me up for stem cell. Any ideas of when this treatment would be approved and available for any of us who wanted it.

Grasping at straws right now. Just so sick of this[/QUOTE]
Sorry avout your bad weekend. I just finished my first three days for this loading dose. My wife and I came back from Baltimore today and I’m looking forward to resting tomorrow befor going back down to Baltimore to finish up for the week. I did get some flulike symptoms the night after I had my first infusions. I was able to walk better than i’ve been able to in a while when we went shopping but I quickly tired and I know some people, like this guy I met today, got substantially better after his third treatment(not the third day of his loading dose, his third sequence of infusions). We are all different. Some respond well immediately, some months down the road and some will not get help with IVIG at all. Yes there are some that get better rapidly after one or two doses. I hpe you are one of them and will pray to that end. God bless you.