Immune Gamma Globulin deficiency Auto-Immune.
 

I have IGG deficiency, due to the work accident in 96 and severe allergies and MCS.

I get IVIGG every four weeks at the Infusion Center. Anyone else in the group have this problem?

I know that MS patients also get IVIGG.

I too get it every 4 weeks, like clockwork!
 

Tho I have CIDP, a different, but similar animal? All in all, the IG helps and w/o it I could function? But, really be in pain and totally grumpy!
Ask questions away! I've been thru a lot of the adverse effects? But wouldn't give up for the good effects I receive. To me it IS a gift.
Hope that you can and do feel better for it! Hugs and hope! :hug::hug::hug:'s!!!!!!!!!!!!!!! - j

Also? Check out this site....
 

http://www.igliving.com/
Sign up so you can read past magazine issues on-line as if you actually had the paper. It has lots of info about all sorts of people and children who rely on IVIG to get by and thrive even.
It's free and you only get on their mailing list, which isn't intrusive.
You can also get the bi-monthly magazine, which can, at times help others understand what you go thru.
Actually getting a clear diagnosis to GET IVIG involves a lot of testing? But all the clearance work and approvals are between the neuro's office and your insurance. You still have to pay some $$'s? But not near the total it could be, and once you make your 'year & catastrophic' deductibles? It's much easier.
I've been getting IVIG for over 6+ years, and while I can pass out when I get a shot? I've never passed out getting IVIG! And I ALWAYS feel better afterwards!
Good luck in getting it? Then TRULY I hope that IT WORKS!
:hug::hug::hug:'s!!!!!!!! - j

Ivig
 

:Talkative:I am new to this group. I found you by accident via a google search. I have never done anything like this before, so PLEASE let me know if I am not playing (talking) by the "rules".

Yes, I get IVIG through a port (I have had 3 ports due to no veins) every 2 weeks...have for the past 3 years; no end in sight, BUT at least I can get it! Many people cannot due to cost. It has helped me so much!!! Before IVIG I was in the hospital repeatedly for SEVERE pneumonia's (ICU) that caused a lot of lung damage. I also have a right hemidiaphragm
I have multiple health issues...mostly due to malfunctioning immune system....Myasthenia Gravis, Hashimoto’s thyroiditis central apnea, narcolepsy, chronic severe pain; due to many back issues including fractured vertebra; + terrible skin lesions all over body, due to very low immune levels and a thymectomy, diabetes, asthma, COPD + restrictive lung disease, (no I have never smoked), narcolepsy, myoclonic seizures.
WOW I guess I just got carried away!!! Must have needed to vent!


Did you have questions about your IVIGG?

I am getting ivig for autoimmune autonomic neuropathy and believe it is a gift from God, what a huge difference it has made, though its been a long road and just starting it up again You said you have had all adverse effects so figured you were the perfect perrson to ask this question. I have gotton aseptic meningitis a few times, its extrememy painful, but I keep going for the overall results make the pain worth it, plus dr said there's really nothing else that can be done. Have you had aseptic meningitis? Did your dr do anything besides steriods, letting it run its course?

Aseptic meningitis is ....
 

either due to a poorly kept or mixed batch or it was infused too fast!
In my major AM case? IT was a combo of both...and in a hospital yet!
I did my research and had kept my notes and guess who got re-trained? Not me!
I had one major headache of the kind when you move your head you see stars! Worse yet? It was rite before Thanksgiving and I had to make a turkey! Needless to say, it was 'prepared' VERRY SLOWLY! :bump:
Felt like I was hitting myself w/every single move.
Read up the 'full prescribing information' of the brand of IVIG you get? Then read and learn about what are safe rates and what are unsafe. Some places just plug you in and chug IT in! IT Cannot be so!
I get A LOT of IVIG compared to some? And I can tolerate getting it into me at certain rates but not any higher than 'X' number! For me it's a 'rate' of 220. And NO FASTER! You do have to learn what and how much you can tolerate and at what rates and over how many days! The IVIG is sort of declaring war on your immune system...essentially outnumbering the mis-programmed internal IG's in you for the better ones.
Can I ask? Did you do any pre-meds? Tylenol or Benedryl? Ask your neuro about these! They can and do help you get thru it w/o too bad of an IVIG 'hangover' [that war in your body?]. Good luck! :hug::hug::hug:'s - j