Aa
Aa
A
A
A
Close
Avatar universal

Does this sound autoimmune?

Hi all I’m new here

I understand that without meeting it is hard to know but I am looking for advice if possible.

I was recently referred to rheumatology after two positive ANA results (low positives) and a low positive P-ANCA, all other tests were negative except my kidney function which is consistently lower than normal.

In terms of symptoms;
Severe fatigue
Extreme headaches
Joint pain especially hands/wrists/thumbs
Lower back pain
Abdominal cramps
Dizziness
Hair loss
Photo sensitivity
Feeling flu-ish
Sinus problems
Congestion
Memory problems and “foggyness”
Muscle weakness and shooting pains
Chest pains and shortness of breath
Raynaud
Peeling skin on my fingers
Extreme heat intolerance
Red face (I look like Rudolph the reindeer)
Mild fevers intermittently
Hives in the sun
Strange rashes (although nothing at the moment)

Medical history;
Migraine with aura
Endometriosis

Family history;
Mother has seronegative psoriatic arthritis and anti phospholipid syndrome

Grandmother has rheumatoid arthritis

Father and grandfather have Raynaud

When I saw the rheumatologist she listened to me stroked my hands and then told me, anyone can get a positive ANA, there was no point scanning me because I wasn’t swollen and that I was just depressed and to do 20mins exercise a day and to get more sleep.

My question is should I get a second opinion or is she right here? I don’t want to have an autoimmune condition but I don’t want to live in pain either.

Thank you
4 Responses
1530171 tn?1448129593
With all of your numerous symptoms, under-methylation should be ruled out.
Right, what on earth is MethylationT?
Your doctor will never tell you, yet it is one one of the few conditions which will encompass ALL of  your symptoms.
Naturally, there are a number of co-factors, beyond  gene mutations (MTHFR)which would cause
Methylation issues. Take some time to  learn about this online. There's tons of info out there.
If your Histamine levels are high, you are  likely  a low methylator or you're  deficient in B12 and Folate .
You need to supplement  with Methylocobalamin B12, Methylfolate, B2 and B6.
As simple as that.
Also check for other deficiencies like Vitamin D, magnesium (ask for RBC electrolyte testing), thyroid hormones (test for Free T3, Free T4 AND reverse T3), saliva 4 x cortisol,  estrogen dominance (check estrogen/progesterone ratio)
Best wishes
Niko
1756321 tn?1547095325
With family history of autoimmune disease, it is  more likely autoimmune. My rheumatologist ordered an impressive list of labs. I would seek a second opinion. Also request vitamin D.
1756321 tn?1547095325
"CLINICAL ASSOCIATIONS OF pANCA

In contrast to cANCA, pANCA are not specific for a single disease entity but tend to be associated with disease groups
which share several common clinical and histological features [90].

pANCA are found in:

(i) systemic vasculitides such as microscopic polyarteritis, Churg-Straub syndrome, and in a minority of cases of classic polyarteritis nodosa, and rarely in secondary vasculitis;

(ii) necrotizing crescentic glomerulonephritis and rarely in other forms of glomerulonephritis;

(iii) chronic inflammatory rheumatic disorders, e.g. rheumatoid arthritis, and in Still's and Felty's syndromes;

(iv) collagen vascular diseases such as systemic lupus erythematosus (SLE), and in Sjogren's syndrome without obvious signs of vasculitis; and

(v) chronic inflammatory bowel disease and associated disorders.

On the other hand, we found pANCA in less than 3% of 400 cases with biopsy-proven WG [30].

Additionally, pANCA (MPO-ANCA) can be induced by drugs (hydralazine, cloza-
pine, L-tryphtophan) [91-93] which can induce diseases associated with vasculitis (e.g. glomerulonephritis [91], pulmonary vasculitis [45,94,95]).

Occupational exposure to environmental factors such as silica dust may provoke MPO-ANCA-associated RPGN: in these patients, the frequency of silica exposure was found to be 10 times that in a control group [96].

In 30% of patients suffering from Goodpasture's syndrome, ANCA were detected in addition to antibodies directed against the glomerular basement membrane [97]."

Clin Exp Immunol 1993; 91:1-12
REVIEW ANCA and associated diseases: immunodiagnostic and pathogenetic aspects
1530171 tn?1448129593
Most people who  I know with autoimmune conditions suspected or confirmed, even the ones who had second opinions and extensive testing, have either gotten worse (majority) or have had  minimal  improvement (minority) while only a handful  had notable improvement.

The hurdle necessary to overcome, seems to be the very same system which supposedly we trust to seek diagnosis and effective treatment.
When for example your pANKA and ANA titres are low positives, rheumatologists  will generally
dismiss them.
Finding one who works outside the recommended protocols is simply difficult, specially when you're using the public health system.

Autoimmune or not, it is totally unfair for sufferers like yourself to be left in limbo, suffering from  numerous symptoms like the ones you mentioned in your post.

Approaching your case from outside the conventional box, one needs to explore potential causative factors which may lead to auto-immune or auto-immune-like diseases.

My  suspicions mentioned in my earlier post are some common causative factors, which may help
shed some light.
Genetics and family history is a good start and you may want to pursue this first.
Look into MTHFR gene mutations in regards to Methylation issues,  HLA-B27 in regards to PsA.

Please note that genetics alone do not necessarily cause these conditions, but presently with the advances in the field of Epigenetics we can correct some imbalances due to certain genetic defects.

Improving nutritional intake, correcting vitamin/mineral deficiencies, detoxing, rebalancing the hormonal system etc. are additional steps to consider.

A reputable functional medicine doctor or holistic practitioner may be able to help you with the above.

Best wishes,
Niko
Have an Answer?

You are reading content posted in the Autoimmune Disorders Community

Top Autoimmune Diseases Answerers
1756321 tn?1547095325
Queensland, Australia
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
The first signs of HIV may feel like the flu, with aches and a fever.
Frequency of HIV testing depends on your risk.
Post-exposure prophylaxis (PEP) may help prevent HIV infection.
Millions of people are diagnosed with STDs in the U.S. each year.
STDs can't be transmitted by casual contact, like hugging or touching.
Syphilis is an STD that is transmitted by oral, genital and anal sex.