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No explanation so far and my doctor thinks it could be related to me doing IVIG except that I had slightly elevated IgM before I ever started the IVIG. He is continuing to monitor it but since it remains just slightly elevated, he does not seem concerned. I have researched "MGUS" and that it...

This is what I suspect but I wish I knew more science so my case could be useful to the researchers. I hope so, too, and I believe there are a group of responders and if they can figure out who is in that group, then other very sick people could be helped. I hope they do not discard the...

Thank you Ryan and Marc for the info above and I will try it in the future and see how it goes!

Ryan, How do you take a "screengrab" from a video to post the slide in your message? I have an iMac computer in case this is relevant and would love to learn how to do this! Thank you for posting that slide and it was the exact one that I was referring to in my summary and had wanted to share...

Andy, can you remind me if you have been tested for any specific auto-antibodies since your ANA titer is so high? I am so sorry and know how scary this is. Do you know what the trigger was? Please carry anti-histamines with you and if you get any reaction where your throat starts to...

I think you will really like the videos and I hope my summaries are helpful and not too much to read! There is no right or wrong way and I click new posts b/c don't want to miss anything... except for the cat thread :emoji_scream_cat::emoji_smiling_imp:

@ahimsa On both boards, I only click "new posts" so I see everything and never pay attention to what forum it is in. But I guess others actually check each forum by hand?

I do not know the answer but I know some rheumy labs are more sensitive and can give "false positives" especially if they are right on the border. My ANA was always negative at 1:40 until 2016 when it shot up to 1:160, speckled pattern, at the same time I tested positive for all the...

I don't know if this will be helpful to anyone but felt compelled to post it. As much as I also wanted the study to be positive b/c Rituximab is helping me and I wanted it to help others, I am not totally surprised that it was negative. I am currently talking with 4-5 people who have had a...

I just watched the second video (posted by Ryan) and can now confirm that these are the same two videos posted on PR. This video of Dr. Jill Schofield was absolutely amazing and again, she could be describing my history of the past 4+ years. I took detailed notes and am posting a summary of...

Thanks, Ryan! I didn't (yet) and I haven't had a chance to go back to that thread on PR and see if the two videos linked there by KMS1990 are the same as the ones here (since DI makes so many amazing videos and lecture series). I am hoping to be able to do this later today. I was also...

What a F*cking dick and you don't need this ENT and will find a better one. You are a rock star for figuring this out and searching out the right team of doctors. Are there any patients with RP who do not ever end up needing to get a trach? One of my auto-antibodies correlates with small...

I am not actually trying to prove anything. My main point was that I felt uncomfortable with people discussing someone who is not a member of this board and cannot reply (but I think I am the only one who feels this way). It absolutely can have fatal infusion reactions with the #1 being...

I guess that answers my question and really makes me want to only post in Member's Only sections but I also want to keep posting in the Rituximab section. I checked that the three things you quoted of Whitney's were not from a Member's Only section of PR and wanted to thank you for being...

I am still confused if we are allowed to link from PR to here? I have not done it, but someone did it to me a couple weeks ago and I was a bit taken aback (b/c in theory I might have shared something there that I did not want posted over here or vice versa). In my case, I have solid reasons...

That was my thought as well. This was also my experience prior to now having two excellent doctors. If you get an abnormal result (whether an auto-antibody or anything else), even if a doctor tells you that it is "normal" or "no big deal", they can be wrong. It may be malicious, or...

@Andy I just watched this video which was PHENOMENAL and thank you for posting it. I took notes and am posting a summary of the video (combined with my own commentary :D) in the hope that it will be helpful for others. I plan to watch the two videos on PR (not sure if one of them is this one...

I agree and thank you Trixie for posting about this. I am hoping this leads you to the right treatment path and I really admire your persistence and research. It is truly like having a full-time job (except one that does not pay LOL).

I am not sure if this is the same video that was posted on PR (along with a second video) b/c I have not had a chance to watch it yet. But I am definitely planning to do so. Thank you for posting it here and I am looking forward to watching it later today.

Trish, thank you so much for your detailed reply and I really appreciate it. I think this is what bothered me the most, that a statement was made, as if it was fact, that a specific treatment made Whitney worse when he is not here to share his own opinion. I generally feel uncomfortable...