My first visit to see Dr Klimas and team

kangaSue

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Well guys, 1 final test came in and I have B cell proliferation. No wonder I feel like death and can’t eat or drink.

I hope this is my answer!

It’s either cancer our autoimmune.
In that case I would suggest having some blood drawn and sent to Mayo to run either their PAVAL or DYS1 panel to check for the antibodies that can occur prior to a cancer being big enough to be detected by other means (paraneoplastic syndrome) if this hasn't already been done.
 

Gingergrrl

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@Belbyr My “like” of your post is for support and not b/c I like what you are going through. I was in a somewhat similar situation and concur 100% with KangaSue re: doing the paraneoplastic panel from Mayo (and can’t imagine that Dr. Klimas would not order it).

If you are positive for any of the autoantibodies, they correlate w/different potential cancers so you know where to start (which in my case was a high resolution lung cat scan). My case turned out to be autoimmune and no cancer was ever found (and it’s been over three years).
 

Belbyr

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Yes that could be the case, two issues. While I hope it is not, at least these things are starting to explain some things. This info couldn't have come a minute sooner as I have a PICC line keeping me hydrated and food is very sparse.

I just got to muscle through these next 5 days to get test results on hematology and 'fingers crossed' no cancer, then hightail it back to NOVA for treatment.
 

Gingergrrl

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You may have more thsn one set of issues.
I agree and you definitely could have more than one issue going on and I am so glad that you have such a thorough doctor (@Belbyr).

I just got to muscle through these next 5 days to get test results on hematology and 'fingers crossed' no cancer, then hightail it back to NOVA for treatment.
I am keeping my fingers crossed for you, too... Do you live far from NOVA?
 
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Belbyr

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@Belbyr Sounds like you are getting somewhere. IVIG has been helpful to me - my total IgG was below normal and subclasses 1 and 3 were low.

I agree about the tests @BeADocToGoTo1 is suggesting. You may have more thsn one set of issues.
I don't know if this would be better in personal messages but how has IVIG helped you? How is life being on it and how functional are you?
 

Gingergrrl

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I'm in Memphis, TN.
That's too bad (not in general!) but that I was hoping you might be closer to NOVA and not have to fly while so ill with a PICC line.

I don't know if this would be better in personal messages but how has IVIG helped you? How is life being on it and how functional are you?
I know you were asking Learner1 but let me know if I can answer any questions and I did two years of IVIG for autoimmunity (with my last infusion in July 2018).
 

Belbyr

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Oh please, do tell! I would like to be informed as possible. Plasma exchange and Rituximab were mentioned as well in the letter so I don’t know what Klimas has up her sleeve.
 

Gingergrrl

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Oh please, do tell! I would like to be informed as possible. Plasma exchange and Rituximab were mentioned as well in the letter so I don’t know what Klimas has up her sleeve.
I have done (and am still doing) Rituximab in addition to the 2 yrs of IVIG but I have never done plasma exchange (in any form). It's probably better if you send me a PM and I am happy to help in any way that I can (even though each person is unique and nothing I say would be medical advice which of course you already know)!
 
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Man oh man my stomach has gotten so bad that it is just IV fluids for now. The pain and nausea... along with bloating is unreal.

I fly out tomorrow morning to see Klimas at 1:00 Florida time to see what treatment is going to consist of.
 
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Man oh man my stomach has gotten so bad that it is just IV fluids for now. The pain and nausea... along with bloating is unreal.

I fly out tomorrow morning to see Klimas at 1:00 Florida time to see what treatment is going to consist of.
Just curious, can you fly with special circumstances to meet your needs? Best to you in travels, let us know how your doing
 
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Man oh man my stomach has gotten so bad that it is just IV fluids for now. The pain and nausea... along with bloating is unreal. I fly out tomorrow morning to see Klimas at 1:00 Florida time to see what treatment is going to consist of.
Best wishes for a safe flight and journey to see Dr. Klimas @Belbyr and please keep us posted when you can.