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Old 04-03-2011, 06:04 AM   #1
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Exclamation Inflammation w/biopsies but bloodwork comes back negative for inflammatory markers!

Please, someone help! I was reading a post made by another member here who said in a conversation that "there are inflammatory disorders whose main blood feature is that there are no positive markers at all!"
... I am desperate to know what these diseases are, and where I may be able to locate some information and/or list of names. I have been battling the health system and doctors for close to 4 years now trying to find an answer for my many symptoms which present very much like one or more auto immune diseases but do not reflect as such in blood work. I can be clearly, very visibly inflamed in my joints, face, lymph glands, but my blood work always comes back with low sed rate levels, crp, and so forth. In 2008 I had biopsy's on both an extremely swollen lymph gland and one of my many skin wounds/lesions, both of which showed a number of positive inflammatory markers, but on the same days I got those biopsies, the blood work showed no inflammatory markers/blood work was "normal." I continue to ask the doctors why, but not one has taken the time to consider the situation as it is, and looked outside of their little box - Instead, because my blood work does not show what they look for to diagnose, they are telling me I am just fine, they can't help me, and pass me on from one specialty and doctor to the next. I would be sooo grateful for any help or anyone who has experienced the same thing!!!
I have a long list of symptoms which include but are not limited to: low grade fevers, random joint and lymph gland swelling (when biopsy was performed the lymph gland visually protruded from my neck) and pain, random nausea, lack of appetite, face swelling, sore throat, numbness in limbs and face, shaking vision, eye pain and pressure (sometimes a droopy eyelid too), extremely dry eyes (test have shown very little tear production), strange pupil dilation not associated with medications, rashes, skin wounds, and extreme peeling of the skin (especially on my face, although occurs on other places too; chest and arms next on list), fast heart rate, hair loss in clumps, nose bleeds, yeast infections (thrush, mucus in stool and vaginal infections), extreme fatigue, "hot spots" on my body, neck and head (like thermal releases in small areas while the rest of my body/skin is normal or even cool to the touch), also seem to have trouble maintaining internal temperature, and random bruising without injury.
All of my symptoms began after a series of three infections experienced in 2006 followed by the loss of a pregnancy in early 2007. As far as I know, both infections and hormone fluctuations (in addition to trauma, which i experienced a lot of resulting from a severe spine condition 10/15 years earlier) can trigger autoimmune disorders, but because my blood work doesn't fit in the box for such diagnoses, I can't seem to get a doctor to help me further investigate. I've been given the label of FibroMyalgia, but even one or two docs have said that it still fails explain a number of my symptoms .. and of course, a few other doctors have told me it's all in my head and I need to get over it.
I know something is not right and a 29 year old is not supposed to feel this way! I need help desperately and would TREMENDOUSLY appreciate any suggestions, ideas, whatever, ANYTHING! Thanks!!!! Oh, and I do have pictures of my before and afters with my skin and inflammation presentations if that would help. I have included two pics of my face, and one of my hand during a flare. I want to note that the face pic during the flare doesn't fully capture the severity of the peeling, rash, swelling and wounds, but it offers an idea.
Does anyone know of any autoimmune conditions which do not show inflammatory markers in blood work?
Again, thank you, and many blessings to all of you struggling with an auto immune disorder or any other chronic health condition! It's not fun to be sick, and few understand what we go through except others battling the same problems, doctors, people/attitudes, and the often ridiculously frustrating medical system. Thanks, Brenna (Catluv)
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Last edited by catluv; 04-03-2011 at 06:14 AM. Reason: adding some additional information

 
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Old 04-05-2011, 06:02 AM   #2
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Re: Inflammation w/biopsies but bloodwork comes back negative for inflammatory marker

Forgot the inflammatory markers, it is possible to have Lupus, MCTD, Sjögren’s syndrome (which sounds like your carrying problems with), but there are many. There are doctors that insist if your inflammatory markers are not positive, that you cannot have an autoimmune disease. This is not true. It can be positive in a percentage of people, but it is not in everyone. I had a diagnosis of Lupus in 2000 by a rhematologist, the only thing that showed up on my blood work was a positive ANA of 1:320 H (3 yrs into being sick). My PCP passed it off as fibromyalgia and I quit going to the rheumatologist (call me stupid because that was the stupiest thing I ever did). I was told that too last year, normal inflammatory markers, no autoimmune disease, but that was through a physicians assistant, and my PCP ignored my test results, my ANA was 1:640, and my RNP was 7.3 H. So, my RNP went down with treatment of an antimalarial, back up when treatment was stopped. Only way I could convince my doctor something was wrong. My daughter's doctor said that a PCP is not qualified/specialized and have no right to try to diagnose an autoimmune disease, that if your ANA is positive, it is their job to send you to a rhematologist. My neurologist thinks I might have MS and I am now being sent to a rhematologist to see if I have MCTD. My inflammatory markers are still normal. How it is found what autoimmune disease you may have is through the ANA test, if it is positive, it might show the autoantibodies to the disease. Like this:

Autoantibody Disease Association
−−−−−−−−−−−−−−−−−−−−−−−−−−−−−−−−−−−−−−−− −−−−−−−−−−−−−−−
Condition Frequency
−−−−−−−−−−−−−−−−−−−−− −−−−−−−−−−−−−−−−−−−−−−−− −−−−−−−−−
Antinuclear Antibody, SLE, mixed connective
Direct (ANA−D) tissue diseases
−−−−−−−−−−−−−−−−−−−−− −−−−−−−−−−−−−−−−−−−−−−−− −−−−−−−−−
dsDNA SLE 40 − 60%
−−−−−−−−−−−−−−−−−−−−− −−−−−−−−−−−−−−−−−−−−−−−− −−−−−−−−−
Chromatin Drug induced SLE 90%
SLE 48 − 97%
−−−−−−−−−−−−−−−−−−−−− −−−−−−−−−−−−−−−−−−−−−−−− −−−−−−−−−
SSA (Ro) SLE 25 − 35%
Sjogren's Syndrome 40 − 70%
Neonatal Lupus 100%
−−−−−−−−−−−−−−−−−−−−− −−−−−−−−−−−−−−−−−−−−−−−− −−−−−−−−−
SSB (La) SLE 10%
Sjogren's Syndrome 30%
−−−−−−−−−−−−−−−−−−−−− −−−−−−−−−−−−−−−−−−−−−−− −−−−−−−−−
Sm (anti−Smith) SLE 15 − 30%
−−−−−−−−−−−−−−−−−−−−− −−−−−−−−−−−−−−−−−−−−−−− −−−−−−−−−
RNP Mixed Connective Tissue
Disease 95%
(U1 nRNP, SLE 30 − 50%

In the early course of an autoimmune disease, the autoantibody might not show up, things might not be apparent in your blood work right away.

Do you know if your ANA was positive? If any autoantibodies showed up in your results? That would help narrow it down. If it's negative (And I am referring to the ANA, not the inflammatory markers), then it might be more likely that you have arthritis, but not the autoimmune kind.

The rash on your face looks pretty extreme. It looks all over though, which with Lupus, you get a butterfly shape that is not all over your face, it's on the bridge of your nose and cheek bones. It can break out from sunlight or tanning beds, and can come and go. Did you see a dermatologist over that? That looks too major for a doctor to blow off as nothing.

Those doctors that tell you it's all in your head, do yourself a favor, and don't go back. We have the choice as to who treats us, who doesn't. When a doctor cannot be understanding to the fact that your sick, they need to go find a new profession.

Do you have thyroid disease, some of your symptoms could pertain to that too.

 
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Old 04-05-2011, 06:04 AM   #3
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Re: Inflammation w/biopsies but bloodwork comes back negative for inflammatory marker

I also forgot to mention that fibromyalgia is not inflammatory. So they cannot or should not be blaming your inflammatory reactions to that. As they are leading you with false information if they are doing so.

 
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Old 04-05-2011, 06:25 AM   #4
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Re: Inflammation w/biopsies but bloodwork comes back negative for inflammatory marker

I'm looking for medical information on this, you might find as interesting as I do.

The ESR is a diagnostic criterion in polymyalgia rheumatica and temporal arteritis. An elevated ESR value has a sensitivity of approximately 80 percent for polymyalgia rheumatica and greater than 95 percent for temporal arteritis.

The ESR is a means for staging rheumatoid arthritis, rather than a major diagnostic criterion. The ESR value tends to correlate with clinical disease activity and to parallel such symptoms as morning stiffness and fatigue, although joint examination is far more useful in assessing synovitis. The sensitivity of an elevated ESR value is approximately 50 percent in patients with signs of rheumatoid arthritis. However, the specificity of an elevated ESR is quite low, limiting its use as a diagnostic test.

The ESR is often normal in SLE even in the face of active disease. Therefore, use of the ESR to monitor disease activity with the ESR alone is not advised. Markedly elevated ESRs in patients with SLE may signify the presence of infection.

In our clinic we do not pursue ANAs unless they are greater than 1:160, or if a patient has other symptoms that warrant it. A positive ANA by itself is meaningless.

By the same token a normal sed rate is meaningless in a patient with known SLE if they are having symptoms of a flare.

(So what I can tell, the ESR is more associated with a specific type of arthritis, or an infection. There are alot of people diagnosed with autoimmune disease with normal ESR's. ANA's by itself are meaningless, but a positive high result is not. This is where my doctor failed me on this one. He ignored the results at 1:320 and 1:640 as meaningless. My rhematologist however didn't. I think that is one thing regular practicioners seriously make their mistakes with).

I hope this stuff helps you. If you have a high ANA, make your doctor send you to a rhematologist, but if you've already seen one, I'd get a second opinion.

Last edited by neveragain444; 04-05-2011 at 06:30 AM.

 
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Old 04-05-2011, 06:35 AM   #5
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Re: Inflammation w/biopsies but bloodwork comes back negative for inflammatory marker

Rhematoid factor:

Normal Results
Results are usually reported in one of two ways:

•Less than 40-60 u/mL
•Less than 1:80 (1 to 80) titer
A low number (normal result) usually means you do not have rheumatoid arthritis or Sjogren syndrome. However, some people who do have these conditions still have a "normal" or low rheumatoid factor (RF).

 
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Old 04-05-2011, 06:42 AM   #6
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Re: Inflammation w/biopsies but bloodwork comes back negative for inflammatory marker

I see my new rhematologist on the 18th, I'll let you know if I get the diagnosis of an autoimmune disease, I already have plenty of test results to get an answer that day. Like I said, my inflammatory markers are normal too. I don't think that means squat honestly and I will find out through the specialist. My first rhematologist diagnosed Lupus with people who had positive ANA's of 1:640 but he diagnosed me with it at 1:320 and said it was in the early stages (mild form of the disease). You really need to find out what your ANA was. Don't let these doctors tell you it's nothing, when it could be something serious. I'll quit posting now. lol. But I hope this helps.

 
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Old 04-05-2011, 05:59 PM   #7
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Re: Inflammation w/biopsies but bloodwork comes back negative for inflammatory marker

Hi Catluv(I luv my cats too!).

I am the one who keeps telling people that lack of a positive blood tests means bupkus in auto-immune disorders. There is an entire class of arthritic disorders that are defined as "sero-negative" because the main blood feature of them is that they don't have any positive tests. Some them are Ankylosing Spondylitis, Reactive Arthritis, Psoraitic Arthritis(and it can precede the development of psoriasis), and Bechet's Disease(has face rashes).

But here is the bottom line with all of these disorders. In 1900, there were 2 arthritic disorders....osteoarthritis and rheumatoid arthritis....you had one of the other......period. By 2000, there were close to 100 of them and no tests for many of them. It is predicted that by 2050, they will have identified at least 200 different arthritic/auto-immune disorders. The research is exploding but that doesn't mean they have a way to test for them. Just like we have no way to do a blood test for Alzheimers, they don't have good tests for many, many of the auto-immune disorders.

So how are they diagnosed? Time and observation. You have to find a doc who is willing to listen to you and watch you over time and put together a picture of what your body is doing to you. Blood work can go positive one day and then negative the next. I have RA but it was diagnosed by an MRI of an inflamed joint as my blood work is negative for rheumatoid factor and other specific inflammatory markers. Yeah, I did have a sed rate that went up and down and a slight increase in CRP and my white count was up and I was anemic. From that and an MRI, they decided it was Ra. And then treating me with a drug specifically for RA slowed it to a crawl....my doc got it right.

But here is the hard part.....I may have had it for years prior to his deciding it was RA but he just couldn't justify putting me on strong drugs until he was sure I was sick. I started my journey downhill at 26 and finally got treated at 53. But the other part of it that my doc is convinced that what I had at 26(and still have) is a separate disorder to the RA. But what it is, he hasn't a clue(body wide tendinitis that started to freeze my joints). The initial drug I took for RA(Plaquenil) really stopped the tendinitis but now I'm on a biologic drug and methotrexate and they really don't help as much and I'm back to cortisone shots. But they have stopped the RA.

And then I got all the symptoms of Sjogrens on top of this but tested negative. My doc says that secondary Sjogrens, that comes secondary to another auto-immune disorder, often does not test positive. Huh? And the drugs I take for Ra don't seem to help the Sjogrens.

This is about as confusing a field of medicine as there is. They find new disorders faster then the docs can learn about them. And the tests and treatments are another mess. I am lucky.....I have a great rheumy and a primary who's wife has JRA. But yet, I end up teaching my primary about the latest treatments. His wife doesn't take the same drugs I do as JRA is different from RA.

My advice is to go shopping. Doctor shopping. Find a doc you like who is at least willing to acknowledge that you have something wrong and wants to watch you and treat your symptoms as best as they can. Then hang in there and wait for the evidence to build up to show what is going wrong. What they found in your skin could be a big clue. Just because it isn't in your blood doesn't mean nothing is wrong.....it just may be hiding in your skin. Several disorders are diagnosed by skin biopsy. In some, the joint fluid may the key. Some require muscle biopsy or other tissues to find the clues. You have clues but what you don't have is a doc who is willing to follow those clues.

I'd try a rheumatologist first. They can be strange docs. They treat people who will never get well and who they really can't help all that much. If they don't have their heads screwed on right, they often burn out and an angry rheumy is a burnt out rheumy. Like I said.....shop. I found a great way to find a good one was to find a meeting of the Arthritis Foundation(they do support group meetings in many areas) and ask there. These people know. And they have area docs come in to speak....another way to interview a doc without cost. Most hospitals do talks for the public...go and learn and meet the doc and talk to them...interview! When I say shop, I mean shop! Find someone you can deal with and who seems to best fit your personality....you may be seeing them for years to come.

It worked for me after years of going from one doc to another and never giving anyone the time they needed to put the puzzle together. I wanted answers and couldn't figure out why they didn't have any. Took a long to learn(I'm not too bright). But once I figured out the profession, they figured out me.

Wish I could give you better advice but that is the field of auto-immunology.

gentle hugs.........Jenny

 
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Old 04-14-2011, 11:36 PM   #8
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Re: Inflammation w/biopsies but bloodwork comes back negative for inflammatory marker

Hello neveragain444 & jennybyc,

First and foremost I would like to thank you both for all of the information you have provided me ... all of the time and energy you put into creating each of the messages does not go unappreciated, and I most certainly have tremendous compassion, understanding and empathy for anyone struggling with a chronic health condition, as I know how doing the most basic daily activities can be overwhelming and very exhausting!!!

On Monday, April 11th, I was seen by a new Rheumatologist who was very on top of it, actually took the time and effort to review my symptoms, history and various test results. I was finally given a diagnosis after 4 plus years of seeking answers to my medical mystery!!! I am so thankful that I did not give up - as I have come close several times, especially after being told by doctors, friends and family alike, that nothing was wrong with me because my blood work was normal, and I inferred to the notion that I was crazy. I even saw a new primary a week prior who told me straight out that contrary to two other specialists stating that something was very wrong with my auto immune system and it was clearly being overly aggresive, that nothing was wrong with my immune system and that I needed to "get over it." Well, he was very wrong!!!

Just as you both shared, I have a sero-negative auto immune disease ... well, apparently the possibility of two of them overlapping, with a likelihood that there is yet a third additional condition, just as you both suggested. I have been umbrellaed under the Spondyloarapathies with Ankylosing Spondylitis and Psoriatic Arthritis. The evidence was painfully obvious on my MRI's throughout my spine and other joints. I don't understand why not one other doctor recognized this very clear inflammation on my scans, but I am most definitely thankful and relieved that this new Rheumatologist very quickly saw this telltale sign, in addition to all of my many clinical symptom presentations, and did not hesitate to make the diagnosis. There appears to be a good deal of damage, which is rather frightening for me, but I am grateful that there are treatments to help freeze the disease process. While the doc could not say for sure, he certainly inferred to the very high likelihood that my spine condition, Spondylolisthesis (both a severe and fused grade 5 slip at L5S1, and a newly diagnosed slip in my neck at C6&7), is connected to the auto immune disease. Another concern is my heart, as I have been experiencing a few heart related symptoms since my symptoms began 4 years ago, and within the last 6 months or so, the palpitations have become more frequent.

I am getting new blood work done tomorrow to ensure I can handle the various treatment options. I am rather nervous and scared about the side effects from the various drugs, and am curious as to what has worked best for you, and what you have learned in the process of the treatment(s)? I noted that if a patient has a history of infections that it's more dangerous to pursue these injections and other meds? I have experienced reoccurring fungal infections since 2006, as well as three back to back infections which happened before the fungal infections started to reoccur. Most western med docs don't acknowledge yeast infections, specifically systemic yeast infections, but the fungal infections I have experienced presented in a number of areas within my body and included: Vaginal, skin, intestinal & bowels, thrush in my mouth, as well as two experiences where the yeast related infection became so severe that I had both auditory and visual hallucinations - all of which responded quickly to probiotics, acidophillis milk, and prescriptions like Fluconazal.

I am nervous, anxious, excited and a bit frightened about taking these various treatments considering my worries around the side effects, but I most definitely want to freeze the disease progress asap ... if you have any suggestions, good or bad experiences with one or more of the treatment options, I am all ears!!! Thank you so much for all of your help! Please keep in touch!

Blessings, Brenna

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Old 04-15-2011, 01:08 PM   #9
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Re: Inflammation w/biopsies but bloodwork comes back negative for inflammatory marker

dear catluv, i'm just tuning into your conversation, and wanted to wish you the best of luck.
RE: drugs... don't like 'em but can't live (well) without them. I've been through 6 months of testing and diagnosis, but "fortunately" had a positive ANA and positive anti-RNP, which means I was diagnosed quickly and started drugs immediately. For someone who rarely popped an aspirin, and totally laughed at my husband as he gobbled vitamins, it was a major adjustment to be scarfing handfuls of pills. But these days, it's just down the hatch and move on!!
It's weird at first, but then becomes routine... just like my diagnosis (MCTD) seemed like the most dramatic thing ever, at first. But now, life is sort of normal, new normal, but normal. It's amazing how quickly you can adapt to a new situation. Try as hard as you can to stay optimistic and upbeat!! Let us know how you do!!!

 
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Old 04-16-2011, 12:03 AM   #10
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Smile Re: Inflammation w/biopsies but bloodwork comes back negative for inflammatory marker

Hello sunsideup,

Good to hear you have done well with your treatment ... I am holding my breath for success with my treatment as well. It's been nearly 5 years since I've felt "normal" .. and as I look back on those years I can see how my life, even the most basic activities, faded away and became so challenging. I liken it to before and after I had my spine surgeries, full body traction and body cast in 1997. I was only 15 when I had my surgeries and spent a number of years before being diagnosed in extreme pain which I believed everyone experienced because it was all I knew. I was told by doctors that I was fine for many years ... I complained of pain and was forced to stop playing sports around the age of 11. The doctors told my parents that I was just fine and was seeking attention, being lazy, etc., and so, as a child who was very submissive to authority figures, I stopped complaining and quickly I believed that everyone felt this way. At the age of 14 my Sacrum was protruding about an inch from my back and the pain was unbearable, ... I spoke up one more time and the very severe condition was finally recognized and diagnosed. I was/am extremely lucky I was not paralyzed from the condition and that they were still able to do something to intervene. If the condition had progressed for any longer I would not be here today. Following my surgeries and traction the pain decreased dramatically, and while in my body cast I said to my mom that I had no idea that people actually lived without such extreme pain. I had my life back .. I felt "normal" .. and it was amazing. As a child I did not have a voice and while I knew something was very wrong I could not get anyone to hear my cries for help. For the last five years I felt as though I was reliving that period in my childhood, but this time I had a voice and could advocate for myself. I learned to trust my intuition and my body, and while battling to get both doctors and friends/family to hear me this time around, I decided that I was not going to give up or shut up and be a good little girl like I did before. My spine condition and its severity has forever altered my life. It will always be an issue for me, as I have continual problems resulting from the way my spine is fused and the resulting nerve damage and deterioration. My biggest fear with these auto immune diseases was that the same thing was going to happen: I would stop seeking answers when people continued to tell me nothing was wrong (and that it was all in my head), when I knew very well something was very wrong, and that the damage would once again forever create serious problems with my health. Even though there's a fair amount of damage as a result of the disease progression at this point, I am soooo thankful that I didn't stop advocating for myself, as this final result could have been much worse how ever many years down the road. Before the diagnosis my only option was to live with the symptoms and ride out each flare as they came (not a fun way to live, as you well know I am sure) ... now that I have "labels" for each of the conditions, I can move towards treatment(s), and I am beyond elated with even the thought of getting some semblance of normalcy back in my life. No one else lives in our bodies except for us ... and while some may think they know how a person feels, when it comes down to it, they don't. Only those who have walked in similar shoes can truly relate to how a chronic illness affects all aspects of ones life ... and while it's certainly frustrating and hurtful to be judged by others, I try to remember that they simply would have no way of knowing how it feels to live in a body with such a condition, and even though there have been times I wished I could put someone in my body for 24 hours, I would never wish such a condition upon anybody. This has not been a day at the beach, but there's a lot more light at the end of the tunnel now that I have a diagnosis, validation, recognition and a real opportunity to improve my health and overall quality of life. I feel like I've won a little victory for all of those who have struggled with the medical system and felt betrayed by their bodies .. I am both scared and anxious to begin treatment, but feel hopeful .. and I haven't felt that way in quite some time.
Thank you for sharing a piece of your experience ... It's so helpful to hear feedback, encouragement, and words of wisdom and understanding from others dealing with similar health struggles. I will continue to keep you updated on my progress as I enter this new path on my journey. Blessings of health, energy, peace, and laughter, Catluv

Last edited by catluv; 04-16-2011 at 12:35 AM.

 
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Old 04-16-2011, 12:37 AM   #11
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Re: Inflammation w/biopsies but bloodwork comes back negative for inflammatory marker

Hello,
I wanted to thank you again for all of your help and information ... It's wonderful to connect with others who have been there and truly get it. Please stay in touch! Glad you love kitties too! Catluv

 
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Old 01-04-2012, 02:31 AM   #12
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Re: Inflammation w/biopsies but bloodwork comes back negative for inflammatory marker

I have almost the same symptoms that you do, and with no explanation. All of my blood work comes back normal, except for one time I showed inflammation, and another time my blood sugar levels were high, but then it goes away. I'm curious to know more.

 
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Old 01-04-2012, 07:01 AM   #13
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Re: Inflammation w/biopsies but bloodwork comes back negative for inflammatory marker

Hi Tjenkins,

Since initially creating the post outlining my many symptoms (and lack of diagnosis & negative blood work), I was finally diagnosed with two auto immune diseases last spring. Perhaps my diagnoses - and related information - may be of help to you in your quest to find answers with your symptoms ...

I was diagnosed with Ankylosing Spondylitis and Psoriatic Arthritis. Both are umbrellaed under "sero-negative" auto immune diseases ... sometimes called Undifferentiated Sero-Negative Spondyloarthorpathies.

Sero-Negative is a term that is used when blood work DOES NOT present as other similar auto immune diseases do; i.e., blood panels come back saying literally nothing of use to the docs, without inflammatory markers and so forth. They are usually able to work to diagnose these conditions with MRI's of the joints; specifically the SI joints in the pelvis. Also, they are supposed to look at symptom presentation, but it seems that all too often they ignore them! Very unfortunate and frustrating ... Which is why these are some of the conditions which take much longer to get a diagnosis.

I also have PCOS and Hypothyriodism, which I believe are connected in some way to both of the auto immune diseases as well, ... although docs typically will not connect them. Although, more and more, within the medical community, they are acknowledging a connection between Endocrine disorders/issues and auto immune disorders .... Often endocrine matters/hormone fluctuations, along with any infections or a series of infections, can and do trigger certain auto immune diseases, specifically those under the Spondyloarthropathy umbrella. Your high blood sugar may very well be connected to undiagnosed PCOS, or what is called PolyCystic Ovarian Syndrome. PCOS is usually diagnosed and treated by OBGYN, although it's also connected to Endocrinology, and recently, I have found information/research connecting it to Rheumatology as well.

At the start of all of my symptoms - aside from experiencing a series of infections, and hormone fluctuations, due to a lost pregnancy - I also endured a chronic Candida infection (another thing that western medicine rarely acknowledges). Candida can also cause havoc with your blood sugar levels.

I hope this was helpful!?! I would love to talk further and share stories if you're interested!?! If you'd like to do so, please message me privately and we can proceed from there. I have so much to share with you regarding a number of things involving these conditions and related subjects. I hope to hear from you soon!

Many Blessings, Brenna (Catluv)

Last edited by catluv; 01-04-2012 at 09:25 AM. Reason: added information & corrected spelling of condition

 
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Old 01-05-2012, 03:21 AM   #14
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neveragain444 HB Userneveragain444 HB Userneveragain444 HB Userneveragain444 HB Userneveragain444 HB Userneveragain444 HB Userneveragain444 HB Userneveragain444 HB Userneveragain444 HB Userneveragain444 HB Userneveragain444 HB User
Re: Inflammation w/biopsies but bloodwork comes back negative for inflammatory marker

I finally got my diagnosis reconfirmed in October for a connective tissue disease, through my neurologist. The rheumatologist said I very well could have but it didn't matter in so many words.

My ANA is 1:640 with mixed patterns and I had a high RNP until I started taking plaquenil but now it's lowered.

Nothing else in my blood work except vitamin deficiencies. I have normal WBC and RBC counts. Normal ESR and other inflammatory markers.

That makes it nearly impossible to get an autoimmune disease diagnosed even if you do have the symptoms, and actually have it. It's quite sad. I layed in bed so fatigued that I couldn't function for 14 years of it. Tried to end my life multiple times. It was not something I could handle. My life was useless.

I am outraged by all this.. I had a diagnosis of fibromyalgia but it wasn't fibro.

I could not function normally before taking plaquenil and that in itself tells it all. My neuro also told me that stuff isn't going to show up in your blood work if you don't have it. He told me not to worry about what all these other doctors thought, I had this disorder without questionable doubt.

 
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Old 01-06-2012, 05:23 PM   #15
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Re: Inflammation w/biopsies but bloodwork comes back negative for inflammatory marker

These symptoms are common for many autoimmune diseases. Skin lesions/sores are a marker for Behcets disease so that caught my attention. It took 20 yrs. for me to be dx because it is rare. I was extremely ill and my bloodwork was normal. Let me know if you have any questions that I could answer for you.

 
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