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ALPS

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14 years 8 months ago #17998 by karatemom3
ALPS was created by karatemom3
I posted a while ago that I think my 30 y/o son has ALPS. He has had recurring ITP, AHA, enlarged lymph nodes and spleen for 23 years. He asked his hematologist to test him. So they took blood and told my son his "high flow" was unremarkable. Sound familiar to anyone? His B12 level is normal. MD is thinking about doing a lymph node biopsy. I've been reading up on diagnosis criteria but find it very complicated. Any one know if a lymph node biopsy is necessary and/or helpful? Thank you Joan

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14 years 8 months ago #18002 by Ann
Replied by Ann on topic Re: ALPS
I know nothing of ALPS apart from what I've read on the internet but if it were me I'd be looking for an expert to diagnose and treat this and not rely on a general haematologist. I don't know how easy it is to get but a look for the specific gene abnormalities would help.

You could try getting advice from somewhere like the ALPS Unit

www.niaid.nih.gov/LabsAndResources/labs/aboutlabs/lcid/alpsUnit/Pages/ALPSUnit.aspx

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14 years 8 months ago #18012 by Rhiannon
Replied by Rhiannon on topic Re: ALPS
Sandi knows quite a bit around ALPS from what I've read on here and hopefully she will pick this up for you as she will know what is helpfull etc
I will try and see if there is a way of friendly nudging her to here so she can answer you in full herself :)

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 8 months ago #18019 by Sandi
Replied by Sandi on topic Re: ALPS
Well, I have a friend who went through a possible diagnosis for ALPS a few years ago. It took her years of tests and doctors and no one ever really definitively diagnosed her. It's a tough diagnosis to get. I researched it back then, but don't remember a whole lot about it. She had ITP and tongue swelling, as well as a slew of other symptoms.

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14 years 8 months ago #18095 by karatemom3
Replied by karatemom3 on topic Re: ALPS
Thank you for your responses. You guys are great. Ann you were very helpful by leading me to web sites that I never came across in a year of researching. Sincerely Joan

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13 years 10 months ago #25795 by karatemom3
Replied by karatemom3 on topic Re: ALPS
FYI: To anyone who has had symptoms of ALPS but had a negative DNT test; please be aware that you could have a false negative if you were on steroids when the test was done. Joan

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