:confused:

yesterday i saw my MD and we confirmed that my CVID (common variable immunodeficiency) is advancing.
i get and IV of IVIG every month and in the past it held me for 4 weeks...in the past 2 years it was holding me three weeks
over the last 3 months i have been experiencing some pretty severe symptoms in 2 weeks time. my immunologist wants to increase the IV's to every 3 weeks. but i want to see if i can get a handle on the symptoms. my regular MD agrees with me.
it is a little scary...i knew that this would come along some day...after all i am a retired RN.
i am frightend of being stuck at home more than i am now

thanks for listening
peace,
mooncrone ;)

Hi, I'm a retired RN also. I have CVIDS and MS. What symptoms are getting worse? I might have some ideas to help modulate your reactions/symptoms. This is a tough disease, but we do have options. Let me know what is going on with you.
Sounds like being homebound is a big prolem for you (and many of us), but let's examine some of the options here. The strength and power to conquer these diseases come from within us as well as from the doctors meds. I'm not saying to stop the IVIG........it's the best thing we have for our syndrome right now, but your other syptoms are as important as the disease itself. Controlling them might make your whole life a little more bearable.
Please let us know what kind of help you need.
Thoughts of peace and comfort are sent your way
Love, Penny

:wave:
hi,penny
it is not only the CVID that is bothersome it is also the asthma,diabetes,IBS etc... :eek:

the symptoms that are getting worse are my IBS and really uncomfortable arthritis symptoms
i started on Mobic last week for the arthritis pain and it is doing OK until yesterday ( i am about 1 week prior to my IV) when my hands and feet are starting to get bad :bouncing:
my bowel symtoms are getting somewhat better with a change in meds.

i try to keep myself busy with reading & computer. most of my friends still work so i spend alot of time alone. i talk to many friends by yahoo messenger

thank you for your good thoughts and i send them back your way...this disease and getting older just sucks :D

peace,
mooncrone

I also have asthma and degenerative arthritis. I just keep trying to do my best whatever comes my way. It is my understanding that the bowel type problems generated from CVIDS are something that the IVIG won't help. I use a lot of lomotil and try to do my best with diet choices. Some days are not so bad, others are miserable. Right now I am in the midst of one of the worst MS relapses that I have had in a long time. I'm on high dose prednisone pulse and taper and am getting worked up for another go round of the Novantrone. I will be able to get it at the same center where I get the IVIG if all my heart studies come out alright. I was pretty boarderline last time I got it, so we will just have to see. I'm not able to take any of the other MS meds (bad liver or the med is unaffordable for me). Increasing doses of Neurontin and the Prednisone seem to be helping the pain and other relapse symptoms, so I think I am on the right track.
Right now the CVIDS seems to be pretty well controlled. I am fortunate!
Hope you are doing better!

;)
it is the day before my IV and i am feeling poorly and can't wait till tomorrow afternoon.
the arthritis like pain is helped by the IV but the bowel (IBS) problems continue.

do you get the newsletter from the Immune deficiency foundation ?(www.primaryimmune.org). in it this month it is stated that primary immune disorders are now being accepted by social security disability. this is good news.
peace,
tish :cool: