Newly Diagnosed?

[liz2mac]

I just want to say hi to anybody who may be looking at this forum who is newly diagnosed or is the carer of a newly diagnosed patient.
Firstly welcome. Most of those of us who use this forum have never met each other, so please don't feel you can't post as you may be breaking into a close knit group of friends. Not the case. We all care for and about each other because we all share the experience of living with a primary immune deficiency. Secondly, please do not be frightened by seeing some of the problems we talk about. Many, many people who have a Primary Immune Deficiency such as CVID or XLA live almost normal lives, only interrupted by the need to have their immunoglobulin replacement therapy. Indeed, if people are diagnosed quickly after the onset of their immune deficiency and get adequate replacement therapy, they should be really well. This is the aim. The problems occur when our illness is not diagnosed fast enough or when we don't get good enough replacement therapy. Many people with theses conditions work full time, have "normal" social and family lives and fit their condition into their lives, rather than living their lives around their condition.
So, if we can help in any way, don't be afraid to ask. But please, please don't assume that everyone who has a PID is condemned to a life of ill health.
Liz

[barbfrombc]

This is a really important message to get out, especially to the new folks Liz. I know my quality of life has improved dramatically over the past 5 years. There is much reason for optimism.

Barb

[emsy]

Thank you for this post Liz. I am one of those people who you talked about that works full time, has a young family to look after and I even exercise regularly. At first I felt like perhaps I didn't really have CVID as I wasnt nearly as ill as everyone else seems to be! Also, I wondered if posting something like this would just be seen as gloating. My personal feeling is that it is nice to know that it isn't all doom and gloom and our lives are not over just because we have this condition.

[john]

this needs to be said liz, nicely put!
i always tell the people i meet who are starting out on ig replacement therapy that they will feel totally transformed once the therapy kicks in.
treatment this expensive is not handed out willy-nilly and the expectation is that the recipient will go on to lead a "normal" life like everyone else, except that they must make space in their lives for therapy!
i know this sometimes might seem a little hard of me, but it almost always works out that way.
there are worse things to have as chronic health problems, at least ours is treatable, though sadly not curable.
as barb says, there is much reason for optimism.
take care - john

[anilla]

thanks, liz! i'm also a newb.

i'm starting infusions tomorrow and am both scared and excited!

[liz2mac]

Hi Anilla,
I hope that your first infusion went well and that you feel more confident about how you're going to feel in the future.
Let us know how it went?
Liz

[roxanne]

Hi, my name is Roxanne and I was recently diagnosed with CVID at the end of last month. I am still going through lots of lab work and trying to take this all in. I have a large laundry list of serious health problems including a rare brain condition from birth, Epilepsy, I am also leagally blind. I have not started any treatment as of yet because they are still doing tests and blood work. My doctor said she had never had a patient with numbers as low as mine. I guess my main questions is does anyone have severe body pain with this condition? That is where all this started with me, trying to find what is causing this horrible pain. And in doing all the blood work they found my very low IG numbers. One doc has said the pain can surely be coming from the CVID, another says they have never heard of that. Everything I have read says, yes, the pain is from CVID. I am confused. Can anyone help to answer this for me? Thank you and God bless you!

[glowing]

Hi Roxanne. Poor you. Being in pain is so miserable and draining. When I was first diagnosed I asked the same thing of others on the pia forum and they said there was a connection. I suffered considerable pain, in joints and ligaments, for years which was put down to arthritis. I have been receiving ivig since last August and I have to say my pains have decreased, though not enough to stop taking Tramadol and paracetamol. Being as I took them before I was diagnosed and my pain was more severe I definitely agree there is a connection with CVID. My immunologist just said he can't comment about it as he doesn't know of a connection. My general health has greatly improved and having less pain certainly helps my mood.
I sincerely hope you can get the help you need quickly to improve your situation and ease your pain. You willl get replies from others who know far more than I do but in the meantime I wish you well.
Glowing

[gilliem]

Hi Roxanne. I had really bad joint pain before I was diagnosed. It decreased a lot after I started receiving ivig but I still have to take Naproxen 2x daily.
I hope you find a real difference when you've had infusions for a while. Please remember ivig isn't an instant, or even a quick fix. You have to be patient, but it sneaks up on you !
Best wishes,
Gillie.

[roxanne]

Thank you gilliem and glowing. It is a big help just to know I am not alone in this. Praying both of you continue to feel well. The Lord bless you both! - Roxanne

[anilla]

Hi everyone,

My first infusion went very smoothly. other than having to be poked twice for a vein. no weird reactions at all. now that it's been a couple of weeks, i notice that i'm starting to feel very very tired and sore again. i thought i hadn't noticed anything when i had it, but in retrospect, i actually did-- no body pain and more energy! d'oh!! the next one is next monday and then i'm leaving the country for 3 weeks. I'll have the next one after i get back.

i am looking forward to the second one because i want to be more mindful and pay attention to exactly what's going on-- what changes i notice.

anyway-- thanks for checking in, liz.

[liz2mac]

Hi Anilla,
that's so good to hear. I'm sure that you will go from strength to strength now. Do keep in touch and let us know how you go on? Its so nice to have the good news stories and helps all other "newbies".
Liz

[beckag87]

Anilla,

That's so good to hear! I've had 4 infusions now and they are really making a difference! Keep in touch and let us know how you are getting on Becks