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Just diagnosed with CVID, could they be wrong?
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I a 37 year old nurse. My doctor sent me to a rhumatologist because of weakness and pain in my joints. She did blood tests and found my immunoglobulin A to be 27 and immunoglobulin G was 400. I also have vitamin B12, D and potassium deficiency. I am extremly tired and my body aches if I do anything physical. I went to an immunologist who said I had CVID. He wants me to start IV treatments in two weeks and I am worried what to expect. Does anyone know how often this is misdiagnosed? What should I expect from the treatment? My family thinks they are wrong because I "dont seem sick to them" It is very frustrating and is happening so fast I would love someone to talk to who has been there. thanks!
Posted on 03/20/09, 02:14 pm
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Reminder: This is a support group for Common Variable Immunodeficiency. We trust you will do your best to remain positive and helpful. For more information, see our rules of the road.

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Reply #1 - 03/20/09  8:19pm
" Hi,

I can't give you much information as I'm new here also and undiagnosed so far.

I'm wondering what the normal ranges are listed as for the test results you gave?

Also, did the immunologist do other tests specificlly to see if you produce antibodies to certain vaccines? "
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Reply #2 - 03/20/09  8:52pm
" Hi, I know that the normal range globulin A is 81-463, and globulin G is 694-1618. They did test for antibody vaccines and I am loosing them. I am no longer immune to mumps, measles or hep B. Being a nurse, I have had all my innoculations this year, but my recent titers came back negative. Did you have the same results? Do you know your globulin numbers? I am lucky to have a great doctor that gave me 4 pages of my blood work and the normal ranges for each test. Let me know what yours are. "
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Reply #3 - 03/20/09  9:30pm
" Hi again,

I'm going to repost my first post here for you. I posted it a while ago and haven't had a response. I don't think this board is very active though you may find it different since you have a diagnosis. I am waiting to see an immunologist at this time so I'm still kind of in limbo. Since I havent seen the immunologit yet I haven't had the antibody testing.

From what I've read many people do very well on th IVIG treatments and feel much better.

I'm searching for a more active forum to try and get some help. I will let you know if I come across anything.

Here's my first post and info:
Hi all,

I am a 41 year old woman. I've been unwell and on disability since my early 20's. I have a diagnosis of CFIDS and Dysautonomia.

I have a teen daughter who is on homebound education with very similar symptoms to mine. I'm desperately trying to find a diagnosis and help for the both of us.

My health fluctuates. I go from bedridden to almost feeling completely well and back again. I'm in a down turn at the moment and trying to keep a positive outlook. It's not easy sometimes.

When I'm feeling poorly I suffer with severe fatigue, chills, night sweats, excessive day time sweating though no real fevers, headaches, swollen lymph nodes, yeast infections (chronic), chronic UTI's, muscle pain, severe joint pain, diarrhea for the past 2 years, 30 lb weight loss, nausea nd lack of appetite, orthostatic hypotension (my BP drops when I stand or sit too long causing fainting) and just general malaise.

My PCP gives me Nystatin and Diflucan for the yeast and that's about it.

He's done numerous workups which haven't found much of anything. I do have an enlarged spleen and Mitral Valve Prolapse and anemia.

About 10 years ago I was given 5 courses of IVIG. My doc said this was to help with the CFIDS. I did not note any improvement.

At my urging he agreed to send me to an immunologist. I just feel that I really need to find out if there's something that can be done since my daughter also suffers. If there's anything I can do to help her I will do it.

My doc gave me blood test results to bring along. The results of which are below (abnormals are *'ed:

IGG Subclass 1 365 (Normal 344-966)
IGG Subclass 2 164 (Normal 133-622)
IGG Subclass 3 40 (Normal 12-138)
IGG Subclass 4 1 (Normal 1-115)
IGG Totl 595 *(Normal 600-1600)

IGG Subclass 1 499 (Normal 344-966)
IGG Subclass 2 192 (Normal 133-622)
IGG Subclass 3 71 (Normal 12-138)
IGG Subclass 4 2 (Normal 1-115)
IGG Totl 741 (Normal 600-1600)

IGG Subclass 1 449 (Normal 423-1112)
IGG Subclass 2 148* (Normal 149-586)
IGG Subclass 3 40 (Normal 29-142)
IGG Subclass 4 1.3 (Normal 1-187)
IGG Total 611* (Normal 700-1500)

Immunoglobulin G 819 (Normal 700-1500)
Immunoglobulin A 94 (Normal 60-400)
Immunoglobulin M 65 (Normal 60-300)

I also had a bone marrow biopsy a few years ago to rule out Leukemia. The biopsy showed absent stainable iron and "a diffuse polyclonal reaction to all antisera".

Basically, what I'm hoping is that maybe someone knowledgable could look over these results and give me an opinion?

I could of course, just take the CFIDS diagnosis and leave it at that but I want to make sure i've explored every avenue. "
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Reply #4 - 03/20/09  11:06pm
" Hi again,
It dosent look like your globulin numbers are that low but I would push your doc to find you an immunologist. From what ive read people with this show all different kinds of symptoms. Have they checked your thyroid funtion or done a CT to look for nodules? That would explain your night sweats, weight loss,sweating and swollen lymph nodes.At work I have seen alot of people with orthostatic bp, unfortunitly we put them on meds and send them home to see their PCP before a we find a cause. I know how you feel about your daughter, Yesterday my kids had to be tested for cvid it was hard to tell them that they may have to have infusions for the rest of their life. Its a shame this board isnt active, if you find a better one please let me know and I will do the same. "
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Reply #5 - 03/21/09  3:47pm
" Hi. I have CVIDS and through Kaiser my test results show that for normal IgG range should be 768-1536, mine is "
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Reply #6 - 03/21/09  3:55pm
" Hi I was diagnosed with CVIDS in 1995. I have Kaiser Permenente Insurance in California. My blood tests came back as showing the normal range for IgG is 768-1536 mine is negative34, for IgA results normal is 139-347 mine is negative 7.0 for IgM normal is 68-190 mine is 8, I have been receiving infusions of gammaguard for last 15 years on and off. Have worked great for me, no side effects. I would not predict any unless you have other issues happening. "
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Reply #7 - 03/21/09  9:19pm
" Hi,
I am surprised that you have negative numbers. That makes me wonder if mine are low enough to need the infusions. This whole thing caught me by surprise, they were looking for arthritis or a connective tissue disorder. I dont have to many health issues. Mitral valve prolapse, and my joints pop in and out of place, and a herniated disk in my back, I am just weak and tired alot. Im not worried about my insurance I work at the hospital so im covered for the teatment. "
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Reply #8 - 03/22/09  2:36pm
" Hi again Sloane. What I know about having CVIDS is that is presents with chronic upper respiratory infections, because all the immunoglobulins that you are low on, fight off any invading bacteria that penetrates mucus membranes and causes infection. That's what CVIDS does. The joints and muscles could be caused by something else, but whatever you do you MUST be treated by a competent immunologist, don't rely on a PCP or a hematologist. "
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Reply #9 - 03/22/09  6:32pm
" Hi,
I saw one immunologist but I did have my PCP set me up with another one for a second opinion. The first one I saw scared me. I went in there thinking I had MS which was the doctors initial thought and came out having CVID. I dont think im that sick. I have my share of colds and flu but I work full time and go to school at night and take care of two teenagers. From what ive heard people with cvid are sicker than me. I think im going to hold off on the treatment until I get a second opinion. Did you see more than one doc? "
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Reply #10 - 03/22/09  8:08pm
" Hi,

I thought maybe thse 3 links might be of interest to you.

Diagnostic criteria: Common Variable Immunodeficiency (CVID)

and Differential Diagnosis of Hypogammaglobulinemia

Debate re: diagnostic criteria:

Don't know if any of this pertains to you but I'm hoping you can glean something from it. "

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