Can it be an auto-immune disorder despite normal blood work?

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rkd80
Regular Member


Date Joined Nov 2011
Total Posts : 34
   Posted 3/12/2017 7:39 AM (GMT -7)   
Hi everyone!

I used to post here in the Lyme forum, convinced it was lyme but after months of herbs and treatments it appears that my chronic pain is not Lyme. Previous post w/symptoms: http://www.healingwell.com/community/default.aspx?f=30&m=3775718&g=3776100#m3776100

I am 36, male and had chronic pain for 22 years, past 10 years it has gotten worse. Switching to a Paleo diet cooled my body a bit and mitigated some pain, but still largely miserable.

Most of the pain feels like it is in the muscle/tendon area within the left trapezius, left neck, right trap, right shoulder and right bicep. Right achilles tendon also started hurting about 9 years ago.

Various traumatic events caused most of the injuries but the inability to heal is what always perplexed me. No matter how many supplements, PT, surgery, chiro, accupuncture, massage, cortizone injections - the pain persists.

I also have an itchy and annoying scalp condition, feels like little bumps/scales constantly, but otherwise no other skin problems.

In the past year I developed weird nerve pain that hits my legs, mostly calves but sometimes thighs and forearms.

In general the pain is always there, level 3 or 4, but every few days it 'flares' up and body heats up. All the pain sites are active and feels like it is burning. Horrible.

I have normal SED, normal ANA, normal CRP.

MRIs do confirm some mild degeneration, some tendonitis, but nothing out of the ordinary out of my age group.

Curious to you experts, could this be some kind of auto-immune condition with normal blood levels?

I am 4 days into LDN and I am getting a sense that my body is responding to it, although a bit early to tell. Still, I usually know when something does not work and there appears to be some kind of change. Since LDN is often prescribed to auto-immune sufferers, I am now wondeirng if this is some kind of psoriatic arthritis?

Thoughts?

(Seashell)
Veteran Member


Date Joined Dec 2012
Total Posts : 679
   Posted 3/12/2017 9:04 AM (GMT -7)   
rkd80:
It can take upwards of several years for auto-immune disorders to present equivocal laboratory findings of elevated ANA and/or other markers.

Awaiting confirmation of a diagnosis of an auto-immune condition can be frustrating and demoralizing as people and physicians around you have no concrete answers.

If you feel that you are having auto-immune symptoms, seeking a consultation with a rheumatologist can be beneficial. They will often be able to correlate clinical signs/symptoms with waxing and waning laboratory values earlier than a primary care physician and begin avenues of treatment with low-dose corticosteroids or biologic medications.

Your symptoms certainly could be auto-immune in nature.

My earliest symptoms of mixed connective tissue disorder were of a generalized body pain when I was in my early to mid 20's. This is not typical post-exercise or over-exertion type pain. It was a generalized discomfort of muscle groups that were not overly used (arm/shoulder muscle groups). My joints felt inflamed and warm to the touch.

Still . . it took several years for laboratory markers to remain consistently elevated. More my experience was waxing and waning laboratory values.

I would encourage you to seek a knowledgeable rheumatologist for a consultation and for routine follow-up.
- Karen -
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15289
   Posted 3/12/2017 9:34 AM (GMT -7)   
Hi rdk, welcome to the forum. Well, after reading your post a couple of times you seen to have a lot of different things going on for sure. You mentioned having surgeries, not sure what type or when. Same with the MRI's & labs that were done.

Does anyone in your family have any autoimmune diseases? AI's tend to run in the family. I have 4 types of psoriasis & the dermatologist that gave the dx was very certain I also have PA. At the time I was already on Humira for crohns disease. I stayed with the dermatologist for a while but finally had enough of his attitude & stopped seeing him. According to the dr that referred me to this guy he is the guru of psoriasis. My dermatologist refused to treat me, he was scared to death of me because I was on Humira, lol. His words were I plan to retire in a few years & if something were to happen to you as a result of being on Humira I would not want that on my conscience. He was very old school. He knew the guy he referred me to rx'd the bio's & was well versed in them.

As far as the scalp thing goes, I suggest being referred to a dermatologist. Generally when the scalp is involved there are other areas that has a break out. A good dermatologist determine exactly what it is.

Next thing is ask your pcp to refer you the best rheumatologist on your insurance plan. A rheummie can order various labs to basically rule out many different conditions. To dx PA, it is a process of eliminating other various conditions. One thought that does come to mind is do you have Fibro. Men also are dx'd with Fibro. Again, a rheummie can make that determination. At least by consulting with the 2 specialists you can hopefully get some answers one way or the other. Even if you have seen these specialists before, I would be seen again with different drs.

I am not a dr so my thoughts are just that. Do I think this is all AI related, not really. But that is for the specialists to determine. LDN is being used more & more for many things with success. It is not restricted to AI diseases.

Sorry I can't really be of a lot of help but this is where I would start. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

rkd80
Regular Member


Date Joined Nov 2011
Total Posts : 34
   Posted 3/12/2017 11:07 AM (GMT -7)   
I saw a rheumatologist about 8 years ago and he concluded nothing, tried some medicine just in case but it had no effect and that was the end of that.

I should see a dermatologist I suppose given that my dandruff is resistant to all natural remedy and to all anti-fungals, so I am guessing it is a piece of the puzzle.

(Seashell)
Veteran Member


Date Joined Dec 2012
Total Posts : 679
   Posted 3/12/2017 11:31 AM (GMT -7)   
Rkd80:
You mention that you saw a rheumatologist 8 years ago.

A lot can change in your body over an 8 year time span, especially regarding auto-immune disease progression and sensory hyperactivity disorders.

I agree with Susie. Get a referral to the best rheumatologist on your insurance plan.

Auto-immune disorders do run on my mother's side of the family. Still, even with a family history it took about 5 years for my auto-immune profile to qualify as mixed connective tissue disorder. My ANA and see rate would vary over time. It took years before a definitive

Keep turning over every rock. Listen to your body. Most often our body is able to tell us what it needs. Find a physician that will listen to you and partner with you.

It is a difficult time to have ongoing symptoms with a concrete diagnosis. Medicine is less giving of the time and focus needed to identify less than common disorders. Keep believing in yourself. Oy

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15289
   Posted 3/12/2017 5:02 PM (GMT -7)   
I would get a copy of my old labs & see another rheumatologist. He/she again will order new labs & the old labs could be used for comparison purposes. As Karen said, it can be a lengthy process trying to dx AI diseases. I have crohns disease which is an AI disease & my gi suspects I had it 20 yrs prior to being dx'd. It was not until I had an emergency resection of the small bowel that I was dx'd. I had a lengthy history of ER visits & admissions to be told it was either the flu or gastritis, lol.

Yes, get in with a dermatologist to see what this scalp thing it about. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums
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