Cryglobulinemia--ECM, Any comments?

[MissMiss]

G-day everyone!

Just got back from PCP visit and the vampire draw.  It's rather odd that I came in today asking about cryo. since he just did a bunch of research on it for a patient who just found out he needs a transplant because of HCV and likely won't make it and has a very bad case of cryo.  That's the bad part, good part is I didn't have to "teach him".

He decided that there is a very high likelihood that I have it.  The thing with my hands and feet awhile back and comments made here got me to looking into it.  We also decided to wait until after treatment to do the bloodtest since it often responds to HCV treatment and knowing for sure now wouldn't change much. I have or have had most all of the signs or symptoms for a long time.  A lot of the doctors I saw would shake their head in wonder.  It sort of feels good to almost know for sure! Is it reasonable to wait on the test, ya think?

We are trying to get out of town for a couple days so if I don't respond right away, I apologize.  Just looking for any comments since this seems to be a very prevelant extrahepatic manifestation.  Thank you all.

missmiss

[NYgirl]

First off don't go jumping off any bridges - a LOT of the symptoms of things we get with this are ALSO the signs and or symptoms for other things ;)

Personally I know that my thyroid symptoms mirror the treatment symptoms down to hair loss and stuff like THAT...so unless I went by blood test results I wouldn't know anything that is going on inside for REAL.

As time goes by the signs and symptoms seem to change and morph into something else...so don't get freaked out until you KNOW you have anything cause chances are..we are just overly obsessive. The group of us in here in general really are!  :)

Good luck with the results - I'm sure you are FINE!

Have some ice cream or some cookies and try to relax!  :)

[NYgirl]

PS I did read that he wants to wait until after treatment to determine the results but I'm not exactly sure why...wouldn't it be better to know if you had it or not for real? What difference does it make except maybe piece of mind for you if the attitude is it might resolve during tx?

Don't they test that anyway?

[dyce]

Please no timeout there , dyce promices , no more wild parties and drinkin on tylenole.

[NYgirl]

Hey man...........don't take my tylenol buzz away!  It's all I got left!

Actually I think that's my Ambien buzz...I thought the eating in the middle of the night thing was most likely fake until I found myself sitting in the middle of my bed with a mallomar cookie in my hand at 4am......I must have been asleep for a while cause it was really melted to my skin...

So now I"m sure that the Ambien buzz is a real thing...if only I could find out if the OTHER side effects from it are true!


hahahahaha

[dyce]

LOL , I don't know , if I start the ambien , I'm afraid I'll lose my sanity I might even start runnin the bars with cando . Couldn't ya imagine us all runnin  around , sleep walkin. Cando would have us in hot water before the 1st wink!

[dyce]

Ha guy , the last time the guys were here , you know , with the special coats , they ordered a c scan for me head . When observing the slides the 1 looked at the other , said tighten that coat somemore, we can't let em get away again!

[BostonGirl]

Hello Missy;
           Personally I would have the cryo test done prior to treatment. You really need to know if you do in fact have cryos. There are many types of vasculitis, cryo only being one type. If you do have cryo, it would also be helpful to know which type of cryo you carry, as well the percentage you have. They measure the levels in % in your blood work.

There are 3 types of cryos ( one from cancer ) which I am sure you don't have. The other 2 are usually from Hep C. Yes, the bugjuice is used to treat cryo and sometimes just mono tx. But again, if you don't get tested for cryo, you will never really know if you really have it or not.

Guessing is not diagnosing. There are many sx that can mimic and even look like cryo. Prior to my positive test for cryo, I was told I was developing Multiple Sclerosis and that it could become fullblown at any time. I had many classic MS symptoms, but again, they overlap with cryo sx too. ( lots of neuropathy, vertigo, raynauld's, lots of joint pain and burning sensations, even purpura ) Do you see my point?

Until I found a great Hemo doc, who properly diagnosed me; no one knew exactly what was happening to me, only that "something " was up. And every so called expert had their own theory and they were all wrong.

BTW> I went negative with the Cryo on tx, but never cleared the virus, now the cryo is back. You might want to find a good liver doc that is knowledgeable with this cryo. It is much more difficult to tx than just the HCV. Teaching Hospitals, large universities are your best options. Also, keep close watch on your kidney functions. Susan

[Forseegood]

I don't know butkus about it other then a friend who goes to Janis has it, her name is Shiela, she's 70 and has the energy of a much younger person, she's never treated for hep in that she keeps on biopsing at a 0 liver damage and her doc (Schiff) feels that she can wait for better meds in her case...anyway, the only symptom she has of Hep C is cryo...but it doesn't seem to get any worse and she's had if for years...

[BostonGirl]

As for the cryo not being a problem for Sheila, that is true. I know Sheila and we have had long talks about it. She has many sx, most are NOT from cryo. I too have zero liver damage, but horrible vasculitis & just recently the cryo went crazy on me. Just because the liver is in good shape does not mean the cryo is not a bigtime threat. It's a very strange critter.

Seems about 40-50% hep people will test positive for cryos. Most people do not have any problems from the cryoglobins floating around. Doctors still do not know why or at what point the cryo rears it's ugly head. But when that does happen, it is pure misery. And when cryo advances, it can be life threatening.

I still think Miss Miss should be tested. I've seen all kinds of docs make false diagnosis based on assumptions & their so callled theories, based on signs & symptoms. As I've mentioned before, many cryo sx can mimic other autoimmune stuff. Only a very sensitive test will reveal if it's present, what % of cryos and exactly what type it is.

[Forseegood]

thanks for the info on cryo, is it more a woman's disease? funny you know Shiela, she's wonderful isn't she? small world indeed...I'm going to forward your info on cryo to another friend of mine, hopefully she doesn't have it...i hope they get a better handle on these issues soon...

[LvdByGod]

very interesting thanks... do you know if her dr is correct in that the test could be wrong on tx??? if it is wrong does it more often show false negatives or false positives i wonder???

[Forseegood]

gee, if I'm this fogged now, how will I be when I'm 70???sheesh!!! anyway, guess my above post was meant for you!

[BostonGirl]

Yes, seems cryo is more of a women's thing, it's autoimmune in nature. Small world that you would know Sheila, she's a doll and I love her. Haven't talked with her in a while, but she's a fighter that one.

As for false positive on tx or false negative, it could go either way. The test is very sensitive, some labs are not too familiar with the proper procedures, so there are a lot of false negatives.

In my case, they think I tested negative for cryo on tx ( week #16 ) because the Hep C viral load was extremely low. I was told that because the vl was so low, it could have caused the cryo production to slow down and possibly show undy levels ( all the while it was probably still there, just sleeping ) This is how they explained it, still sort of like a guessing game if you ask me.

So, fast forward, did not clear the Hep by 6 months, had too many sx to justify another full year of the tx. So, I stopped tx >> still had a low viral load, and still had undy cryo.

Now the latest vl is back to over 5 million and I was told the cryo will begin attacking again. Didn't have the cryo test again, didn't want to go all the way over to Stanford.

My doctor explained it to me that the cryoglobins look for the virus to kill off, can't find it so they attack healthy tissues, joints, organs. My cryo really didn't go full force on me until my viral load shot up to 56 million, that is when it hit hard. Miss Miss, I hope this answers some of your questions, I know that there is very little info out there on cryo and most docs just scratch there heads.

[LvdByGod]

her dr said that she could get a false positive on tx...is'nt that what she's saying? i wonder if that's true? i got tested for it while on tx, and the dr didn't say that to me...nor did he get back to me so i assume i was negative...i hope! i'll have to check on that specifically in case they dropped the ball.

her combo of symptoms do seem to match perfectly with the cryo...and it sounds like the dr is asuming she has it. that would be unusual for a dr to say if he wasn't sure...

i would like to know the treatment for cryo... are you guys saying its interferon? is it that the interferon kills the hep c which in turn helps cures the cryo???

i do remember reading that cryo can make it difficult to clear the hep c...has anyone else heard that???

sandi

[Forseegood]

yeah, aren't we lucky? all these women's diseases and we have to be the ones to give birth as well...I thought we could at least catch a break on heart disease but it seems we are just as unlucky on that account as well...whatever, guess we are at least spared erectile dysfunction..ha ha! that's about it...

[MissMiss]

Thanks for all the good info.  Like you say, there isn't much out there and I was hoping someone actually dx'd with cryo would do some posting.  Thank you.

First, I don't mind waiting to be tested since I am at week 34/48 and I'm thinking there is a better than good chance it may come back a false negative, which wouldn't do me much good.  Since my hands and feet finally calmed down, I don't think I have anything "active" going on right now so that also may bring back a false negative.

For years I had no insurance so did not see a lot of doctors.  But, those I did see mentioned MS a few times, I do have the Raynauds, many unexplained seriously painful neuralgias, frequent bouts of the purpoa(sp), the list goes on.  There just seems to be a lot pointing towards cryo or something close.

After treatment, if these things continue, my hope is I will at least now have a direction to look.  Through the years I have acquired this guilty attitude when somethng new and unexplainable shows up and feel the doctors look at me as though I am asking for drugs or am making it up.  Just finding out about the HCV was a weird kind of relief to finally have some kind of answer.  That may not make much sense but is pretty close to how I feel.

Thanks again for the info.  Anything else you may want to share I would be happy to receive.  Thanks.

I do hope you see this since I am a few days late posting.

miss