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Agirlandhertort1 05-19-2012 12:26 PM

Inflammation
 
I went to a new neurologist who said that I needed to see a reuhmatologist. Although he said he couldn't treat me, he ran some labs before I left the office.

I got the first set of results last night, and my ESR (sed rate) and C-reactive protein levels were elevated. I know this is a marker for inflammation or possible autoimmune connection, but I am waiting on the other tests.

I am honestly elated that my results were abnormal! At least now I have proof that I am NOT crazy :D. I don't know what this means exactly, but at least the next doctor can't dismiss me for having "normal" test results.

I was in extreme pain last night (considered urgent care) with skin burning all over, but I was so happy to have "proof" that I still went to bed happy!

en bloc 05-19-2012 02:57 PM

I certainly understand you feeling like your problems have been qualified with some abnormal results. I'm sure they'll get to the bottom of it.

What were the other labs requested? It would have been nice if he ran some basic autoimmune panels so you have results with you at your first visit with the rheumatologist.

mrsD 05-19-2012 05:37 PM

I've had elevated ESR for over 30 yrs. It hovers around 25-30.

But all my ANA and other inflammatory markers are normal.
C-reactive protein normal too.

So further testing is a good idea as en bloc states.

There are some borderline people like me who don't test positive on much, but still have some inflammatory thing.

I think that is why aspirin (in AlkaSeltzer) works for me.

There are really no answers for many of us, however.

Idiopathic PN 05-19-2012 06:32 PM

Quote:

Originally Posted by Agirlandhertort1 (Post 880937)
I went to a new neurologist who said that I needed to see a reuhmatologist. Although he said he couldn't treat me, he ran some labs before I left the office.

I got the first set of results last night, and my ESR (sed rate) and C-reactive protein levels were elevated. I know this is a marker for inflammation or possible autoimmune connection, but I am waiting on the other tests.

I am honestly elated that my results were abnormal! At least now I have proof that I am NOT crazy :D. I don't know what this means exactly, but at least the next doctor can't dismiss me for having "normal" test results.

I was in extreme pain last night (considered urgent care) with skin burning all over, but I was so happy to have "proof" that I still went to bed happy!

I do relate to how you feel about the "abnormal" results. I was laughing while reading your post. :icon_lol: We are the only few "species" who are happy to have abnormal results!

Of course, we ARE NOT crazy. What we feel is real, regardless of what those doctors think.

Since when did you have your neurological symptoms? I have seen 3 neurologists and I will be seeing another new (4th) neuro.

Let us wish ourselves good luck in this journey of finding the cause, or at the least confirmatory diagnosis.

Take care and God bless.

Agirlandhertort1 05-19-2012 09:26 PM

Quote:

Originally Posted by mrsD (Post 880987)
I've had elevated ESR for over 30 yrs. It hovers around 25-30.

But all my ANA and other inflammatory markers are normal.
C-reactive protein normal too.

So further testing is a good idea as en bloc states.

There are some borderline people like me who don't test positive on much, but still have some inflammatory thing.

I think that is why aspirin (in AlkaSeltzer) works for me.

There are really no answers for many of us, however.

I have been on an aspirin regimen since October, so I can only imagine the results without it. He also ran a lupus and RA panel, along with a few other things that I don't remember. He said one of the tests had to go out of state, so it would take awhile.

My ESR/SED, was 37, and my c reactive was 1.6 (the lab states anything below 0.9 is normal). I don't know what the other tests will hold, but I'm sure a reuhmatologist will at least investigate further. I've heard that they are much better "detectives" than neurologists.

Has anyone else seen one?

mrsD 05-20-2012 05:56 AM

1.6 is not that high. Some labs give different ranges.

My C-reactive protein is usually around .9, but when I had my last root canal (I was having blood work done at that time by coincidence), it jumped to 1.5 that time!

So it can reflect something else going on in the body too.

There are people with C-reactive protein that are much higher.
readings of 10 and above!

Agirlandhertort1 05-20-2012 09:33 AM

Quote:

Originally Posted by Idiopathic PN (Post 881001)
I do relate to how you feel about the "abnormal" results. I was laughing while reading your post. :icon_lol: We are the only few "species" who are happy to have abnormal results!

Of course, we ARE NOT crazy. What we feel is real, regardless of what those doctors think.

Since when did you have your neurological symptoms? I have seen 3 neurologists and I will be seeing another new (4th) neuro.

Let us wish ourselves good luck in this journey of finding the cause, or at the least confirmatory diagnosis.

Take care and God bless.

My problems began maybe in 2010, but they were so minor that I let it go. Then I began having deep leg pains last May, but I didn't get truly concerned until I had the TIA in October. Ever since then, I have been on the decline.

I hope you have answers soon. I don't know why the neuro suggested a rehumy, or why he requested the bloodwork even though he wasn't going to treat me, but I'm glad he did!

Agirlandhertort1 05-20-2012 09:41 AM

Quote:

Originally Posted by mrsD (Post 881085)
1.6 is not that high. Some labs give different ranges.

My C-reactive protein is usually around .9, but when I had my last root canal (I was having blood work done at that time by coincidence), it jumped to 1.5 that time!

So it can reflect something else going on in the body too.

There are people with C-reactive protein that are much higher.
readings of 10 and above!

Mrs. D, I just went back online, and my results for the rheumatoid factor was positive as well! When I was tested in March, the only abnormal value I had was the sed rate of 37, so for me, having every test listed as "high" on the chart is news that I get excited about.

I have long suspected autoimmune disorder, since many of my problems come/go in flares. I read that you will only test positive when you are having a flare, if the autoimmune disorder has not progressed past a point.

I understand that the values were not extreme, but they were all abnormal, so I feel further investigation is at least warranted.

mrsD 05-20-2012 11:58 AM

A positive Rh factor is a pretty good sign... that is probably why
you need a Rheumy.

I had that test twice over the years, and my doctor said it had a high false negative rate (so I've had it repeated). So getting a positive on it is a clear sign you have problems. I've had arthritis for many years, so I had testing done for lupus, Rh factor, ANA etc more than once.

Let's hope your issues are easily controlled and treated. Make sure they do the coagulation tests, to make sure you don't have sticky blood. En bloc knows alot about those, and can help you there. I've never had those, myself.

Idiopathic PN 05-20-2012 07:15 PM

Quote:

Originally Posted by mrsD (Post 881166)
I had that test twice over the years, and my doctor said it had a high false negative rate (so I've had it repeated). So getting a positive on it is a clear sign you have problems. I've had arthritis for many years, so I had testing done for lupus, Rh factor, ANA etc more than once.

Dear Mrs.D,

I had 4 times tested for Rheumatoid Arthritis and ANA in the last 2 years due to my arthritis. All the tests were done before my neurological symptoms.

Is it possible that the result negative can become positive several years after?

Thank you.

Agirlandhertort1 05-20-2012 08:19 PM

Quote:

Originally Posted by Idiopathic PN (Post 881318)
Dear Mrs.D,

I had 4 times tested for Rheumatoid Arthritis and ANA in the last 2 years due to my arthritis. All the tests were done before my neurological symptoms.

Is it possible that the result negative can become positive several years after?

Thank you.

I know you addressed this to Mrs. D, but I can tell you that my first (and only other) Rh test was negative. I might be able to find the link later, but it said that with autoimmune disorders, many times they will test negative until the disease progresses past a certain point. Also, many people only test during an active flare.

Of course, close to a quarter of all people with ra don't ever test positive. I know some doctors will treat the symptoms, and consider you as having it.

Idiopathic PN 05-20-2012 08:53 PM

Quote:

Originally Posted by Agirlandhertort1 (Post 881328)
I know you addressed this to Mrs. D, but I can tell you that my first (and only other) Rh test was negative. I might be able to find the link later, but it said that with autoimmune disorders, many times they will test negative until the disease progresses past a certain point. Also, many people only test during an active flare.

Of course, close to a quarter of all people with ra don't ever test positive. I know some doctors will treat the symptoms, and consider you as having it.

Thank you for your kind reply.

This is quite becoming more confusing to me! I do not understand why certain blood tests could result to negative and yet positive with the illness, example:

1) Sjorgren's Syndrome - some blood tests could be negative but confirmatory test is through lip biopsy
2) Gluten Intolerance/Celiac - some blood tests can be negative but confirmatory test is through biopsy

One fourth is a significant population with RA symptoms with no positive result. Is there no confirmatory test for this case just like the above cited example?

en bloc 05-20-2012 09:14 PM

Actually, up to 40% of Sjogren's patients are sero-negative...staggering numbers.

You will find many different opinions on positive labs (and when they occur) with autoimmune diseases. Bottom line is that autoimmune diseases are still very poorly understood. There are MANY out there who flare or are in active states of disease, yet still sero-negative. Sometimes (I have read) medicines or other conditions might be the reason labs are negative. I have always been negative for Sjogren's yet, my disease was confirmed by lip biopsy and is in advanced stages.

I'm happy for you that you'll get some answers now and that makes treatment SOOO much easier and more effective.

When is your appt with the rheumatologist? Please keep us posted on the incoming labs.

Agirlandhertort1 05-20-2012 10:40 PM

Quote:

Originally Posted by en bloc (Post 881347)
Actually, up to 40% of Sjogren's patients are sero-negative...staggering numbers.

You will find many different opinions on positive labs (and when they occur) with autoimmune diseases. Bottom line is that autoimmune diseases are still very poorly understood. There are MANY out there who flare or are in active states of disease, yet still sero-negative. Sometimes (I have read) medicines or other conditions might be the reason labs are negative. I have always been negative for Sjogren's yet, my disease was confirmed by lip biopsy and is in advanced stages.

I'm happy for you that you'll get some answers now and that makes treatment SOOO much easier and more effective.

When is your appt with the rheumatologist? Please keep us posted on the incoming labs.

I have an appointment with the GP on Tuesday, and she will be writing the referral then. Since it is a large clinic, I am sure I won't have to wait too long for the rheumatologist.

That is incredible about your Sjogren's! It further proves that the blood tests are very flawed. Is that disorder responsible for your PN? Is it something that you can be treated for? I am glad that you had a doctor willing to provide the biopsy, as I know how hard it is to get testing done.

I sincerely hope that everyone finds answers. Our stories are so similar, with unexplained pain/issues, and being put off by physicians when the tests come back "normal."

I do understand that these abnormal labs only start the conversation. I know I have a journey ahead for the right diagnosis, but I'm just thrilled that I have evidence that proves it's not psychological!

mrsD 05-21-2012 02:22 AM

I think that the tests we have now don't test all the potential antibodies out there. The MG forum also has several people with myasthenia gravis who are seronegative for that.

Tests cannot be developed when the offending antibody has not
been identified yet.

More on Rh factor testing:
http://arthritis.about.com/od/radiag...heumfactor.htm
This site claims that high blood fat content will yield a false positive.

en bloc 05-21-2012 06:21 AM

Quote:

Originally Posted by Agirlandhertort1 (Post 881379)
I have an appointment with the GP on Tuesday, and she will be writing the referral then. Since it is a large clinic, I am sure I won't have to wait too long for the rheumatologist.

That is incredible about your Sjogren's! It further proves that the blood tests are very flawed. Is that disorder responsible for your PN? Is it something that you can be treated for? I am glad that you had a doctor willing to provide the biopsy, as I know how hard it is to get testing done.

I sincerely hope that everyone finds answers. Our stories are so similar, with unexplained pain/issues, and being put off by physicians when the tests come back "normal."

I do understand that these abnormal labs only start the conversation. I know I have a journey ahead for the right diagnosis, but I'm just thrilled that I have evidence that proves it's not psychological!


Yes, the Sjogren's is the cause of my PN. In some cases there are treatments (IVIG for one) to help with PN from an autoimmune disease. However, they found my dorsal root ganglion is damaged (ganglioneuritis/ganglioneuropathy) from the Sjogren's, and there is no effective treatment for that, to date.


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