tuna55
tuna55 MegaDork
9/12/18 3:24 p.m.

47 six months ago, accompanied by super pain and super weakness, then 4.7 a few days later on the upswing. Moderate pain now (but no weakness) and 29 yesterday.

 

If anyone has actual information or insight, I'd love to hear it. My doc is working on it also but I'm impatient and inquisitive. 

z31maniac
z31maniac MegaDork
9/12/18 3:39 p.m.

I'm sure you've already done the googles so, but it appears to be a protein released by your liver in response to inflammation. 

Seems one of the very common reasons is RA (Rheumatoid Arthritis). My girlfriend was just diagnosed a few months. The Humira shot seems to be slowly turning things around.

 

But something like half of RA patients show normal levels. Basically the only answer without further testing is "response to some type of inflammation everything from a tissue injury, to RA, to ?????"

Dr. Hess
Dr. Hess MegaDork
9/12/18 3:50 p.m.

CRP is pretty non-specific.  An elevated level generally means "you're sick."  You probably already knew that, so the test isn't all that useful.  Like an Elevated Sedimentation Rate.  OK, now everyone is in agreement "you're sick." 

tuna55
tuna55 MegaDork
9/12/18 8:09 p.m.

Cool

 

i have a whole battery of other tests. Last time this thing was accompanied by elevated sitting pulse and blood pressure, they said probably because of pain.

this time not nearly that level of pain, normal sitting pulse and normal blood pressure. Lots of other blood tests, one specifically for RA which was negative although there are such a thing as false negatives. Last time RA was negative also so that makes three negative RA tests. 

 

No fever either time. 

stuart in mn
stuart in mn UltimaDork
9/12/18 8:27 p.m.

For several years I've been battling a disease called amyloidosis.  Wikipedia actually has a pretty good explanation so you can go there to find out more, but the short answer it has to do with abnormal proteins and protein levels that can cause a whole bunch of odd symptoms that include pain and weakness (in addition I've had many other things going on, including but not limited to neuropathy, severe GI issues, and I've lost around 85 pounds).  It's rare enough that many doctors familiar with it - I went through a whole series of specialists and incorrect diagnoses here in Minneapolis before I finally got an appointment at the Mayo Clinic; fortunately they're one of the leading hospitals in treating the disease, and were able to figure it out pretty quickly.  It's diagnosed by taking a small biopsy from the fat on your stomach.  It doesn't have a cure, but symptoms can be alleviated and it can potentially be put into remission with chemotherapy and/or a stem cell transplant.

Not saying this is your problem (I am definitely not a medical professional) but it may be worth asking your doctor about.

z31maniac
z31maniac MegaDork
9/13/18 7:11 a.m.
tuna55 said:

Cool

 

i have a whole battery of other tests. Last time this thing was accompanied by elevated sitting pulse and blood pressure, they said probably because of pain.

this time not nearly that level of pain, normal sitting pulse and normal blood pressure. Lots of other blood tests, one specifically for RA which was negative although there are such a thing as false negatives. Last time RA was negative also so that makes three negative RA tests. 

 

No fever either time. 

As for RA, just remember, 45% of all people eventually diagnosed with it "pass" the RA test. 

tuna55
tuna55 MegaDork
9/14/18 8:01 a.m.
z31maniac said:
tuna55 said:

Cool

 

i have a whole battery of other tests. Last time this thing was accompanied by elevated sitting pulse and blood pressure, they said probably because of pain.

this time not nearly that level of pain, normal sitting pulse and normal blood pressure. Lots of other blood tests, one specifically for RA which was negative although there are such a thing as false negatives. Last time RA was negative also so that makes three negative RA tests. 

 

No fever either time. 

As for RA, just remember, 45% of all people eventually diagnosed with it "pass" the RA test. 

But pass three of them?

z31maniac
z31maniac MegaDork
9/14/18 8:20 a.m.

Yep. Those markers may not indicate it, but all the other symptoms do. 

One of the things that helped my girlfriend finally get diagnosed properly (after nearly 2 years) was the swelling in her hands and slight curve in the last knuckle on each middle finger.

STM317
STM317 SuperDork
9/14/18 9:12 a.m.

RA is degenerative. It gets worse with time. That's why it's possible to pass all of the tests now, only to find out later that it is in fact RA.

Im not saying that your case is RA, just explaining the reason why so many RA sufferers are initially cleared, and a correct diagnosis can take a long time.

tuna55
tuna55 MegaDork
9/14/18 9:23 a.m.

Got it.

 

Thanks for the info. If you're super interested, PM me and I'll send the full bloodwork, but I don't feel like posting that here.

Toebra
Toebra HalfDork
9/14/18 1:11 p.m.
STM317 said:

RA is degenerative. It gets worse with time. That's why it's possible to pass all of the tests now, only to find out later that it is in fact RA.

Im not saying that your case is RA, just explaining the reason why so many RA sufferers are initially cleared, and a correct diagnosis can take a long time.

It is degenerative, but that is not why the lab tests come up negative.  Perhaps a better way of looking at it is that it is one of many auto immune diseases.  Something triggers the immune system into an inappropriate response and it attacks your skin, or your joints, or the lining of your intestinal tract, whatever.  The lab tests are looking at various things that are more a reaction to the disease than the cause of it.  I have patients that clearly have rheumatoid disease, and the only stuff elevated is the Sed Rate and the C Reactive Protein, everything else is negative.

tuna55
tuna55 MegaDork
9/14/18 3:18 p.m.

In reply to Toebra :

Thanks for the info!

 

For additional background, sed rate was normal for me all three blood tests that I have access to.

 

 

tuna55
tuna55 MegaDork
9/21/18 11:13 p.m.

I'm mostly better, but I am hitting a total brick wall at 4-5pm. I'm walking around, doing things, being relatively fine, and then I feel like I've been up for six days. I can't talk straight, can't stand, eyelids droop. The whole thing. I seem to get better around 8 or so.

 

My back is better. Dr. is stumped. Rheumatologist doesn't see a need to see me, is stumped based on the data.

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