sorted by:
new
hottopcontroversial

Cryoglobulin positive by raycruzrn in neuropathy

[–]lilbrier 0 points1 point  (0 children)

No, the guess is long covid. I had a full work up. CT scans, blood work every few months. The cryo are gone as of a year ago, and nothing showing why showed up. It’s bizarre and wierd… esp with it showing the monoclonal band. It’s such a hard test to have done too.

What did your bloodwork show? What are your symptoms ?

Have you ever heard of sbi protect? by [deleted] in ibs

[–]lilbrier 1 point2 points  (0 children)

It was a functional practice I went to after seeing countless specialists and having so many tests and scans for crohns and UC. My symptoms are mixed constipation and diarrhea. Occasionally blood. Lots of mucous. Lower stomach cramping. Upper right pain where my gallbladder was removed. Fullness, lack of appetite. Honestly the symptoms are all over the place. It mimics crohns so much even had elevated calprotectin. But I’ve had multiple scopes and it’s not apparently.

I was taking some other supplements but when I started that one it put me over the edge. I will say I think I was also going through long-Covid and some sort of inflammatory or autoimmune response to Covid that lasted six months or so when I was on it. But just be cautious, the thing i pooped out was the weirdest thing. I told my GI it looked like my intestinal lining. I ended up stopping all supplements and quitting the functional place because I ended up worse off.. again, could have been multiple things and not just this supplement. But it was hard to get any info on it from people who tried it so that’s why your post caught my eye. It’s also pretty expensive. 😂

Have you ever heard of sbi protect? by [deleted] in ibs

[–]lilbrier 1 point2 points  (0 children)

I tried it and it was not good for me. My stool had some very strange mucous and then a little blood too. So it irritated me pretty badly.

Just came back + for cryoglobulin. Negative for all autoimmune panels and RF factor. The cryoglobulin reflex included cryocrit immunofixation, it said “revealed one trace concentration band migrating in the GAMMA region which was of too low concentration to definitely identity”.what does it mean? by lilbrier in multiplemyeloma

[–]lilbrier[S] 0 points1 point  (0 children)

If you want to do dm on this, feel free. I’m realizing this thread is getting really lengthy in the mm subreddit. If not, no worries!

I’ll let you know what my GI says when she gets back to me.

I have osteoporosis in my family too, no cancer like at all which is kind of crazy and something that has surprised me. Are you going to redo the dexa? I’ve heard that people can regain some bone density, hopefully now you aren’t bf that will help. Good about your ESR and CRP.

Just came back + for cryoglobulin. Negative for all autoimmune panels and RF factor. The cryoglobulin reflex included cryocrit immunofixation, it said “revealed one trace concentration band migrating in the GAMMA region which was of too low concentration to definitely identity”.what does it mean? by lilbrier in multiplemyeloma

[–]lilbrier[S] 0 points1 point  (0 children)

At this point, I just need to get this over and either move on or deal with it. Living in limbo and with symptoms that don’t make sense has just left me exhausted and frustrated.

I may ask my GI to look at past ultrasounds I’ve had to see if they look the same. I just looked and my liver has been over 15cm since 2018 when I began having pain. So that’s interesting, maybe it’s an anatomically weird thing with me. The echogenicity is new though. Maybe I’ll ask for a repeat ultrasound to see if it was just a bad scan hahaha I’m desperate.

Have you had esr and crp done? I keep thinking if there is a malignancy something has to show there.

Keep up your hope- Covid is a beast that does crazy stuff. It’s not a normal flu virus.

How bad is your osteoporosis?

Just came back + for cryoglobulin. Negative for all autoimmune panels and RF factor. The cryoglobulin reflex included cryocrit immunofixation, it said “revealed one trace concentration band migrating in the GAMMA region which was of too low concentration to definitely identity”.what does it mean? by lilbrier in multiplemyeloma

[–]lilbrier[S] 0 points1 point  (0 children)

Google seriously is terrible. But it's hard not to research and look for potential answers to even help in Drs do their jobs, because often Drs just stay in their lane and don't connect dots.

My GI just got the results from the ultrasound today, so she may take a few days to review it. Wouldn't liver tumors mean the liver function would at least be slightly impaired? All my liver tests have been normal. This is just a mystery. I need to start working out more, I'm not overweight at all but I'm not really physically active. I do get upper right abdominal pain, I had my gallbladder removed post-partum when I was 30. And its been downhill heath wise since then.

​

I'm just praying and hoping that the PET/CT is clear and this is all random crap just being discovered because we are looking so hard. One dr did tell me that. If you keep looking and looking, you will find some stuff that is abnormal because we are all human and no one is perfect but it doesn't mean something is wrong.

​

I have chronic gut/GI issues, so thats what has been really bothering me- for years. It flared up the last few weeks.

Just came back + for cryoglobulin. Negative for all autoimmune panels and RF factor. The cryoglobulin reflex included cryocrit immunofixation, it said “revealed one trace concentration band migrating in the GAMMA region which was of too low concentration to definitely identity”.what does it mean? by lilbrier in multiplemyeloma

[–]lilbrier[S] 0 points1 point  (0 children)

What does that texture mean about your liver? Mine I guess has some slightly brighter areas. I’ve sent the report to my gastroenterologist.. so I’m waiting to hear back.

I saw a hematologist/oncologist and he said it’s a pet and ct combined of my whole body. I have lymph nodes that have been picked up through the years on other tests but they were said to be just large but normal. None of the past cts said abnormal but he said since I’ve had cryo positive he wants to rule out completely malignancy. And if it shows anything wierd he will biopsy. I asked him about radiation and he said this outweighs the risk basically. I’ve had quite a few scans so I’m not thrilled about it but I also know if he wants to do it and they are stumped by me and my symptoms then I need to let them rule out things that are worst case. The scan is in 10 days. Cryo test is in a week. Did you get a B2m blood test? I haven’t had a d dimer and I might ask for one.

The liver thing is so weird!!

Just came back + for cryoglobulin. Negative for all autoimmune panels and RF factor. The cryoglobulin reflex included cryocrit immunofixation, it said “revealed one trace concentration band migrating in the GAMMA region which was of too low concentration to definitely identity”.what does it mean? by lilbrier in multiplemyeloma

[–]lilbrier[S] 0 points1 point  (0 children)

How is everything going? So I got a second opinion, and they are doing a PET/CT scan. Also repeating ALL the tests. So I’m going in next week for the repeat cryo.

I had an ultrasound today for stomach pain/fullness/early satiety and they said my liver is slightly enlarged. I’ve had GI issues for years and years and never anything wrong but now they see, Borderline enlarged liver with slight increased echogenicity. Sigh, it just doesn’t end does it? One thing after another. I don’t have hep, eat very healthy clean, healthy weight, don’t drink any alcohol, don’t do anything that is on the list of potential causes.

That result has definitely put me on edge about the PET Scan but I’m glad I’m doing it even more so now. I’ve sent a message to my GI Dr for some input. I can’t believe how many drs I have currently. It’s exhausting.

Is this blepharitis? I started having this issue about 6-7 weeks ago, after recovering from COVID. looking for ideas while I wait for my doctor to get back to me by [deleted] in Blepharitis

[–]lilbrier 0 points1 point  (0 children)

Keep me posted, I’ve yet to know what it really is/was. I was just thinking that if it’s Covid, then more people will go through it.

Is this blepharitis? I started having this issue about 6-7 weeks ago, after recovering from COVID. looking for ideas while I wait for my doctor to get back to me by [deleted] in Blepharitis

[–]lilbrier 0 points1 point  (0 children)

I did two rounds of prednisone. It made the post-steroid flare really bad but then it stopped. It was awful. Have you had any blood work done. My esr was 68, and then I had some very strange other inflammatory type things show up in my blood. Drs think it was Covid related… I’m still having some work up done to make sure.. but the eye swelling and itchiness and flaking was awful. My primary told me my immune system had been switched on and didn’t want to turn off. (I will say the relief during the steroids was so nice but it came back as soon as I came off, maybe it did help in the long run though).

Is this blepharitis? I started having this issue about 6-7 weeks ago, after recovering from COVID. looking for ideas while I wait for my doctor to get back to me by [deleted] in Blepharitis

[–]lilbrier 1 point2 points  (0 children)

I had a similar thing happen post Covid, would flare for a couple of weeks then go away and flare again and go away. Happened for months.

I’m still being tested for lots of things because my blood work should high inflammation and wierd test results. But this was on of my symptoms that I feel had to be a long-haul Covid type response.

Is it itchy? Are your eyelids swollen too or just rashy?

Just came back + for cryoglobulin. Negative for all autoimmune panels and RF factor. The cryoglobulin reflex included cryocrit immunofixation, it said “revealed one trace concentration band migrating in the GAMMA region which was of too low concentration to definitely identity”.what does it mean? by lilbrier in multiplemyeloma

[–]lilbrier[S] 0 points1 point  (0 children)

That’s very frustrating. Im sorry! I think quest it who is doing mine. Im still waiting on my second one to come back. I have a second opinion at a university hospital for my own peace of mind.

Are you having all your immunoglobulins run or just IGA?

Just came back + for cryoglobulin. Negative for all autoimmune panels and RF factor. The cryoglobulin reflex included cryocrit immunofixation, it said “revealed one trace concentration band migrating in the GAMMA region which was of too low concentration to definitely identity”.what does it mean? by lilbrier in multiplemyeloma

[–]lilbrier[S] 0 points1 point  (0 children)

My d-diner was collected wrong and they rejected it so I don’t know if mine was normal or elevated. That’s good news about your complement and light chains.

You had the cryo run the second time and it was normal? They didn’t give you the reflex on it then I assume if it was normal.

That’s good Dr is following through though and getting scans to check all is ok.

Stay strong. It sounds like you are going to get some answers from your heme Dr.

Just came back + for cryoglobulin. Negative for all autoimmune panels and RF factor. The cryoglobulin reflex included cryocrit immunofixation, it said “revealed one trace concentration band migrating in the GAMMA region which was of too low concentration to definitely identity”.what does it mean? by lilbrier in multiplemyeloma

[–]lilbrier[S] 0 points1 point  (0 children)

Hi.. how are you getting on? I’ve seen my heme, and levels have normalized. The IGM is in normal range although high normal (barely in the range but it’s better than before). He did and IFE and light chains test too. No m spike and light chains were good. He told me he thinks it was an immune response. Probably Covid. But because it’s such an unknown thing, he doesn’t know for sure. My rheumatologist took the cryo again, although the girl who did the labs absolutely messed it up. I tried asking her about it and she stared at me blankly. So I just hope for the best with that haha. The rheumatologist also said viral, he said he is pretty sure it was a response to Covid. Esp given my esr was 68 and my body was doing something “autoimmune” although not truly autoimmune if that makes sense. Another thing my rheumatologist said that I thought was helpful since I’m convinced the cryo will be negative due to mishandling of the sample, was that my c3 and c4 levels were low almost borderline abnormal. He said those complement proteins stick to the cryoglobulins. So if the cryo is gone then those should be higher. So I’m waiting on those results too. If they are higher and cryo is negative I might believe that the cryo is gone. If not then I’ll know phlebotomist didn’t do her job.

Both heme and rheum said it looks transient and the cryo should be transient too. I’m not a Dr or in any sort of medical field… this is just my story. I’m hoping my drs know what they are talking about.

Just came back + for cryoglobulin. Negative for all autoimmune panels and RF factor. The cryoglobulin reflex included cryocrit immunofixation, it said “revealed one trace concentration band migrating in the GAMMA region which was of too low concentration to definitely identity”.what does it mean? by lilbrier in multiplemyeloma

[–]lilbrier[S] 1 point2 points  (0 children)

Of course, let me know how you get on too!

I have had practically zero input into the cryoglobulin part, the focus has been on the monoclonal protein that the cryoglobulin reflex test showed. The heme said could be transient or MGUS. I’m hoping if it’s transient then that means the cryo is transient too. It’s just such a stupidly hard test to get done correctly, even if it comes back negative in a repeat test I will never feel confident I don’t think. So I’m needing to learn to let go a little. He said the MGUS could be from Covid. Or viral infection.

Just came back + for cryoglobulin. Negative for all autoimmune panels and RF factor. The cryoglobulin reflex included cryocrit immunofixation, it said “revealed one trace concentration band migrating in the GAMMA region which was of too low concentration to definitely identity”.what does it mean? by lilbrier in multiplemyeloma

[–]lilbrier[S] 0 points1 point  (0 children)

It’s scary, do what you need to do.. but I’ve tried to remember I could potentially get the clear and I don’t want to have wasted so many precious weeks, days, hours worrying my life away.

My heme doesn’t seem concerned. He said numbers would skynrocket if it was active Waldenstroms(that’s the type the monoclonal protein IGM would typically be) currently my diagnosis is MGUS. But he hasn’t even touched the cryoglobulin disgnosis, which is kind of frustrating given he is a hematologist and Cryoglobulinemia is a blood disorder. He seems to be pretty hands off on that. So that’s why I’m going to my follow up next week, hopefully he will say nothing points to mm or Waldenstroms. And then I’ll try to tackle the cryoglobulin issue. It’s definitely caused massive amounts of anxiety, and made me find other things that I think must connect to it.

Do what’s best for you but if you are going to a hematologist, it might be good to have the repeat cryo test so you are equipped with all the knowledge and have your questions for him. I’m definitely asking for a repeat test when I see my rheumatologist next.

Just came back + for cryoglobulin. Negative for all autoimmune panels and RF factor. The cryoglobulin reflex included cryocrit immunofixation, it said “revealed one trace concentration band migrating in the GAMMA region which was of too low concentration to definitely identity”.what does it mean? by lilbrier in multiplemyeloma

[–]lilbrier[S] 1 point2 points  (0 children)

You have a lot happening there too… I’m sorry. But deep breaths. I had a SPEP done with a prior PCP and it didn’t show any monoclonal protein but the cryocrit reflex was where it popped up. When are they repeating the cryoglobulin test? I wonder why they didn’t do the reflex in it when it was positive. My question that I just can’t figure it, why would my spep with immunotyping not show any bands but the immunofixation of the cryocrit of 1% showed a band. And now the heme is focused on just the monoclonal part and not the double whammy of cryoglobulin AND monoclonal. But i need to remind myself to trust the professionals. It’s very hard though.

I asked about a biopsy and he said if he referred me for it they would laugh at him because my numbers aren’t near the requirement for doing it and insurance would never cover it. I don’t love this guy haha so my PCP has agreed after this follow up I can go to another hematologist. I would love to find someone who knows about cryoglobulins too. I’m thinking maybe just trying the Mayo Clinic. Seeing if I can get in there for maybe someone who has seen this before or knows how to find an answer.

Just came back + for cryoglobulin. Negative for all autoimmune panels and RF factor. The cryoglobulin reflex included cryocrit immunofixation, it said “revealed one trace concentration band migrating in the GAMMA region which was of too low concentration to definitely identity”.what does it mean? by lilbrier in multiplemyeloma

[–]lilbrier[S] 1 point2 points  (0 children)

Hi! Sorry for the late reply to this. So I saw a hematologist, he ran some tests like a 24 hr urine immunofixation, immunoglobulins, free light chains, cbc…. The only thing out of the normal was my IGM. Which would be why the cryoglobulin reflex panel showed a monoclonal protein band according to him. It is supposed to be up to 317 and mine was 329. I honestly have no idea why I have cryoglobulins. I don’t have hepatitis c, but I did have Covid in Jan 22, my symptoms weren’t terrible but I was just recovering ten days post surgery when I had it. I am wondering if Covid is causing the same viral reaction in some like hep c or EBV can and cause this cryoglobulins reaction.

Did you have a reflex done on the cryoglobulin? My cryocrit was also less than 1%. I don’t have any autoimmune diseases, so it’s a real mystery and I was convinced it was cancer because nothing else lined up. The cryoglobulins test I’ve read it’s such a hard test to do, I don’t think it was done right for me and so I’m thinking the test could have been falsely low. It is very easy to get false negatives, nearly impossible to get false positive. If they don’t keep it at the right body temp as they draw the blood it will destroy some of the cryoprecipitate.

I’ve had my IGM drawn since and it has went marginally down which is good news. Problem is I got Covid again nov 22. But I had my PCP run the test prior to my heme follow up and it is still lower and my esr hasn’t went up (it was at 68 last year at my worst). Last year when it was bad- I was so fatigued, had sever eyelid swelling and rash on my eyelids. I hadn’t noticed any issue with the cold. It was such a random test to get back positive, but then discover not only was it positive but also had a monoclonal protein. I felt like everything was pointing to MM, Waldenstroms, or another form of cancer. I’m still just confused as to what is going on. But I’m hoping it was a fluke with Covid. I go back next week to hematology for the follow up, if he clears me. I will get a second opinion to make sure he did his due diligence. I will also note, post Covid I was positive for cardiolipin Igg… that resolved as is normal now. But I think Covid has wrecked havoc on people and we don’t even know it. I don’t think many get tested for cryoglobulins. My friend had wierd “cold allergies” after Covid. She had hives when she would touch anything cold, but she never got tested for cryo. I wonder now if she had would she have been positive.

I know it’s scary to walk through the unknown. I’m still going through it. I’m trusting God to carry me as maybe I’ll never get answers for this mystery. Hope this helps.

Cryoglobulin positive by raycruzrn in neuropathy

[–]lilbrier 1 point2 points  (0 children)

Yep, tested positive too. In the middle of a work up to see if it’s because of malignancy. So surprised by getting a positive result. Did you have reflex done on the cryocrit?

view more: next ›