GreenGirl, I am so sorry to hear of your struggles. It sounds like you might have allot of gastro problems, is this true? I have only recently been diagnosed with CVID after at least 10 years of trapsing around from doctor to doctor without real relief. Tell me some of your symptoms and maybe I can offer something. What is the source of most of your pain?

Bless you, MY worst pain is the entire gut/gastro tract but that causes all over pains and complications, I also have severe neurological symptoms and developed acquired nystagmus 7 years ago, it came after a partial stroke. Tell me about CVID? Immune deficiency? I have complement deficiency but the Dr thinks there is an auto-immune condition lurking. Bless you sincerely for your support, it all helps so much.

I wish YOU well! :)

It saddens me to hear that you have been through so much. Do you have a diagnosis of CVID? I had assumed since you are getting IVIG treatments that you must.
My years of illness and frustration were about gastro problems and serious bladder infections. The last couple of years I have been in and out of hospital with remarkable bladder infections that no one could figure out. I went septic a couple of times and nearly died. Similar 'unknown' problems with the GI tract. Pain coming from all over the place that no one could figure out. It seemed to keep changing locations. When I finally lost 35 pounds in a month one doctor began to take me seriously and with allot of nagging I found my way to diagnosis. Not that that is the end of all of this, but certainly gives one a fighting chance. Have you had GI infections, or been diagnosed with IBS or Chron's or anything like that? It's a terrible thing I know. I had endoscopies, colonoscopies, gall bladder removed and everyone kept saying it all looks beautiful. Meanwhile I was wasting away and withdrawing into my own world of pain and depression. Does any of this sound familiar? I had never heard of your eye disorder before, but that sounds like another diffiuclt challenge for you. Sometimes I believe it would be better to just get diagnosed with a single thing, no matter how horrendous. But then again, I think that we may have been inflicted with this in some way to teach us something. Let's hope there is a reason, because basically, it sucks!! :) sorry for ramble. I love your photos. You are lovely and strong. You will rise above these things, I know this.

It takes awhile for IVIG to work, especially if you were pretty sick, as least thats how it worked with me. It takes a while to get your body back on track.

Thank you, Yes I have only just had my second at the proper dosage, I did not have it for a year and then I was only getting 6 grams which was far to low. I NEED this to work, it has helped on a lower dose so I am praying it works on the higher. I am very sick with many complications so it is much harder for it to battle through, thank you for all the support, it keeps moral higher.

I wish you well.