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Discussion Topic: Any Online support groups for patients
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10-19-2007 @ 4:21 AM
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When I emailed someone from the Jeffrey Modell Foundation here (on the left menu bar Contact Us) I was given a great online support group at Yahoo for PID and CVID patients. Here's the link
http://health.groups.yahoo.com/group/PIDsupport/ to request membership....hope to talk to you all on line. It's a great group....tons of information AND best of all you will never feel alone again with your illness. LC
This message was updated on 10-19-07 @ 9:39 AM
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12-02-2007 @ 9:31 AM
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Hi, I have horrible neck pain, fatigue, and depression. I am constantly getting sick too- I'm IGg subclass deficient. I hope to be starting Vivaglobin at home soon. I've been researching and there are ties with low IGg levels and pain, chronic fatigue,and fibromyalgia. I've found this after months of researching. Gosh, I'm sorry you are having side effects, but I would think the subcut. is a lot more tolerable than getting an Iv w/ a large volume, you know? I'd love to talk with you.
triciawalther@sbcglobal.net
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12-03-2007 @ 4:36 PM
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The best on-line support group I've found is on Yahoo under PID-Primary immune deficiencies. It's given me a lot of info and some great people to talk to.
We have all ages (I'm 35), parents and patients.
I've learned a lot about sub q, esp. Vivaglobulin I do IVIG but there are a lot more options out there than I realized.
Jennifer www.homenurse10@yahoo.com
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12-10-2007 @ 9:36 PM
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I was diagnost in 04, when my insurance stop paying for my Hospitals IV my doctor suggested to do sub q, mow for a year, I have lots of question, in the begining o.k.but I have ben getting infections since May every 3 month, with the Hospital IVI only got sick once a year. I am 60 and will love to chat with other older people about this sikness
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09-06-2008 @ 11:32 PM
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My name is Janie. I'm a 49 y/o with Primary Immunodeficiency Disease. I just put in a post if you'd like to read it.
I am deficient in IgG-3 and Mannin-Binding Lectin or MBL's which active the complement portion of your immune system. I also do not retain antibodies from vaccines given to me. I keep getting more profoundly fatigued - increasing severely over the last year and a half. I'm also on the low-normal side of IgG1's and IgG4's.
I'm going the end of this month for an evaluation at Mayo Clinic's Primary Immunodeficiency Clinic prior to beginning the IgG Therapy.
I am worried about the treatments, I keep developing new allergies at an accelerated rate for the last 3-5 years. Usually, if there's an odd chance of reaction to something, I end up with it..
I would love to be able to talk with someone else who is coping with the same issues.
We shouldn't all have to reinvent the same wheel.
Janie
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01-07-2009 @ 10:51 AM
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Hello!! I am from Coventry, RI and would love to talk with you. I have been suffering with these symptoms for some time and was not diagnosed till recently. Please contact me if you can.
ktweddle@cox.net
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01-27-2010 @ 1:45 AM
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I was just diagnosed with hypogammaglobulinemia 6 months ago at age 61. I am now 62 and undergoing IVIG every four weeks. Tomorrow will be my 4th treatment. Just starting to notice less congestion upon waking in A.M. How long did it take for everyone to notice improvements? I'm wondering if I'm expecting too much of the IVIG. Having been ill ALL of my life since infancy, it was quite a relief to be diagnosed with a real disorder. Did anyone else suffer family members thinking you were being a "drama queen," exaggerating how lousy you felt, losing friends because they stopped calling since you were always ill, losing husbands because you didn't feel like doing things. I need someone to talk to and I feel so alone, because I've been on disability from other health problems since 1999 and have no close friends anymore, don't go to church (I always got sick afterwards) and have isolated myself. Thanks for your help. This is my first time on here. SuzC  Suz122947@Verizon.Net
This message was updated on 1-28-10 @ 1:09 AM
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01-29-2010 @ 8:39 AM
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Hello Sue
Welcome to this site. This is a great site- be sureto check outtheir posters on how to diagnose the disease and whattests you should have had.
As an adult with PIDD, you might like to go to www.primaryimmune.org and sign in. You can find a support person- adult in your state. I am 63 and a support person in my state.
I was diagnosed with IGG#3 deficiency at age 57 after unsuccesful sinus surgery.
Yes, we have all gone through all that you have.
Losing jobs we loved; having people say "Are you sick again?"
I will email you also with some support info.
Betty
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