How have you been Maurice? You are like the Wizard of our forum!

So nice to see you are still here!

Love,
Erin

Yooo! Im at a standstill currently...still on 40mg of pred a day, ivig 3x a month, 275mg of imuran a day. I have applied for the stem cell trial at Northwestern Memorial Hospital in chicago and have been getting very good reviews from them. They asked me to come out next week for a consultation and im hoping that they accept me. If not I will be going off the imuran and switching to tacrolimus which is a new used immunosuppresant i guess? I have never heard of it, but my neuro said either give her 6 more months of imuran or switch. I dont like the imuran because im still weak and still doing IVIG. Not worth it..but im hoping for the transplant!

Glad your starting to feel better!

Tyson

Yeah they do grow way to fast. I miss my tiny babies! If I had my way I would have had at least eight! But that's not possible so I will just spoil the two I could have lol. My brother and his fiance just had twins on July 1st. So I have been getting to see tiny babies lately, I'm just not too sure whether that helps or makes it worse.

Yeah my hubby has been having a really hard time with what is going on with me. He feels so helpless. He has been helping me with the injections that I can't reach to do and I think he dreads it more than I do because of how much they hurt me. But getting to see him more, even with all that he does, has been absolutely wonderful!

Wow 20! Talk about growing so fast. If it helps, you DO NOT look old enough to have a 20 year old!

I'm so glad you have a wonderful husband. It really takes it toll on them to see us go through this, and anybody who isn't going through this can't really understand. But just the fact that they try is amazing! He sounds like a great man!

No they haven't tried IVIG, my doctor is really afraid to try any new medicines with me. She's just so worried about what my reaction would be.

No problem stopping by, I think about you every time I log in to neurotalk. I was so glad to hear from you!

Love,
Kristie

You made my day. My week.
When I first came here reading your posts picked me up.
I hope things keep improving for you.
Im thrilled to see you back.

SO GLAD TO HEAR THAT YOU ARE MOVING FORWARD AND HAVE A PLAN WITH THE STEM CELL>>>>IF YOU DON"T MIND ME ASKING HOW DO THEY DO THAT? I wonder why more people aren't offered that option!

I've told every neuro I've had that I will do ANYTHING, try ANYTHING to feel better!

Are you liking the IVIG? I get it once monthly for 2 days........780 the first time and 740 the next...........still loving it!

You feel better, sweetheart!

Love,
Erin

We are very, very blessed! I would love to have some twins to fawn over! just miss the way they smell and how their hair is so soft - like feathers! LOL!

My hubby had to give me shots as well. They are for brittle bones.....finally I can give them to myself! Now I'm giving HIM some......was always a needle phobe before.......now I don't even flinch.....

Big hugs!
Erin

Hey sweeetheart! Are you still doing your gorgeous woodwork? What have you been up to? Are you feeling OK?
I HAVE MISSED YOU!
Love,
Erin

Erin- Thanks a lot! It is a trial...not many people have done it, and you have to meet many many qualifications. Failing 3 medications, being intubated, being antibody positive (preferred), failure of thymectomy..etc. But I know what you mean, youd do anything to feel better. They excepted 10 people to participate in the trial and it the trial timeframe was set to 12 years...that gives you an idea of how many people have done it..

They give you chemo to destroy the immune system then do leukopheresis to harvest stem cells then when your immune system is destroyed to the point of no return they implant the stem cells to grow a completely different immune system...Im not sure if all youve been through could handle this much more!

I feel better knowing your back and things are moving along for you.
I missed you alot.

Erin, glad to hear you are feeling better. I wasn't on here last spring because I couldn't stay caught up with school work. I checked back in this summer and was surprised to not see you on here.

I have started a regular dosage of Prednisone for the first time. Previously I took it when I was run down or had bad sore throats. I am taking 10 mg every other day. Hopefully it will help me to have enough endurance to get through the school day. It also helps the pain in my sore legs.