Test results questions

[Anony813]

Hi, I just recently found this forum and have some concerns.

Over the past few years I've had very bizarre and troubling symptoms and have been to doctors and specialists many times. They don't seem to believe my symptoms or sweep them under the rug as it can't be that bad.

Back in 2017 I went to a rheumatologist, trying to figure out what is wrong with me and my ANA was positive 1:160. The problem to me with this is everything was negative except for antiphosphatydleserine/antiprothrombin igg.

I'm a 29 year old male, never smoked.

My symptoms over the past 5 years have been significant and hard to describe and many tests have actually shown some evidence as to how I feel but doctors just pass me along and are not too concerned I guess so I continue to struggle along everyday.

Some symptoms that I can explain and accompanying tests that may indicated why:

1.Shortness of breath upon any exertion or even sitting or laying down.

- chest x-ray - hyperinflated lungs

- complete lung function test - very elevated total lung volume and residual volume yet my oxygen levels in my body are elevated and I've never smoked.

- tried inhalers which don't help

2. Entire back, neck , shoulders even legs are uncomfortable and painful

3. Heart feels like it's not beating correctly, palpitations, chest pain, pressure, other weird sensations

- ekg. Right heart hypertrophy, inferior q waves and right atrial abnormalities. Other times the ekg is normal so go figure

- 5 echocardiograms all basically normal. 2 showed elevated pulmonary pressures which is deadly, more on that next

-after the elevated pulmonary pressure i had a heart catherization which actually showed normal pulmonary pressures on rest. During this test I also did a exercise test, the pressure in my heart and lungs during this test dropped to 0 or even negative at times and the doctor was pretty stunned as he'd never seen it before.

4. Feels as if I'm having a stroke or heart attack countless times these past couple years. It's hard to explain but that is how I feel.

5. Disoriented, brain fog, unreal, disconnected from body feeling. These are constant and never go away.

6. Extreme fatigue, hard to sit up sometimes

I've included a picture of the test results for the possible aps antibody.

I guess my question is can this antibody cause aps or any of my symptoms. Don't tell me to ask doctors as they don't care, which is why I'm asking here

[Lure2]

Hi,

Have you had relatives with similar symptoms? The bloodtests seam to be negative to the APS-antibodies but even with negative antibodies (they may go up and down) you can have APS.

I have pulmonary hypertension and two leaking heartvalves and live in Sweden. I am triplepositive APS with high titres all the time for 17 years.

I am still alive, feel rather well, and yearly we do an Echocardiographie with doppler on my heart and lungs but the pressure is stable as to the pulmonel hypertension. Guess the anticoagulation helps me with that.

Fantastic that you have had a Catherization done also! That would get a good answer.

I do not know where you live and if you have contact with a Specialist of Autoimmun illnesses. At least I guess you have contact with a Cardiolog. Hope he understands APS!

I am not a Doctor and as I am primary APS I have the heart-issues ( a bit rare) together with neurological symptoms typical for APS. Warfarin has been my lifesaver as we have too thick blood that has to be thinned.

Have you tried any Baby-Aspirin as to the neorological symptoms.

It may be very important that you keep your bloodpressure down as that could be a symptoms of APS together with Lung/heart-issues. My heart-symptoms were also related to my exstremely high bloodpressure before I was anticoagulated and had started Warfarin. Very difficult to get it down without thinning the blood at an INR of 4.0.

Usually heartvalve-issues is a symptom connected with pulmonary hypertension and APS.

If you feel you have a heartattack you should call an ambulance. Have you done that? I am not an expert of the heart at all.

[Anony813 in reply to Lure2]

I'm glad your doing well with those issues, that's fantastic. I was planning on trying a baby aspirin to see if it does anything.

The problem is I've asked many doctors about this positive test and they don't know what the positive antiphosphatydleserine means, even the rheumatologist that ordered it doesn't. I've tried to research it but there's so little on it.

I've seen a few links saying it's a newer more conclusive indicator for aps and sticky blood.

Could this potentially cause my symptoms if the blood is too thick to move through my body correctly? I can't seem to find much on it

[MaryF Administrator]

Hi and welcome, there are many on here from all over the world, if you say where you are located, people will try and guide you to the nearest person who can help you. I enclose a charity website: ghic.world/ There are some specialists on there, and if you are in the USA, many members of this forum can suggest specific consultants who may be able to help. If in the UK, we have many consultants listed over on the right hand side of the forum under 'pinned posts'. I was seronegative for years with Hughes Syndrome/APS, not any more, also not sero negative for Lupus anymore.

I also enclose this paper for you, and will say that many of us also turn out to have a Thyroid problems, mine lay undiscovered and making me ill for years due to doctors only doing the TSH test, I ordered my own tests for more detail with antibodies and other thyroid tests, and it did show up. ncbi.nlm.nih.gov/pmc/articl...

I fact often the trio of disease mentioned frequently by Professor Hughes' himself is Hughes Syndrome/APS, Sjogrens Disease and a Thyroid problem.

Also make sure that your main doctor tests your vitamin D levels and also your B12 and Folate and Ferritin, B12 deficiency is not uncommon when you have autoimmune diseases, (I also had that, not diet related), and it can cause a host of problems. pharmacytimes.com/publicati...

It is with a lot of us, like putting a very complicated jigsaw together, and we have, many of us shared similar frustrations on the way to a long diagnosis, don't give up!

I hope you continue to try and get some answers, you will find this forum is supportive and useful.

MaryF

[Lure2]

As to my suggestion of taking a Baby-Aspirin to see if perhaps some neurological symptoms will ease a bit (you have thought of that yourself also) I think you should do that. Take it with food. It is enough with 75-100 mg Aspirin.

APsnotFab did have the answer to your positive antibody (IgG). I have read about that antibody but did not know it meant something when we are negative to the other three.

Hope you will redo all the tests and that you will find a Specialist in your country. Was it the USA?

Did you have relatives with autoimmun illnesses? That is an important piece in the puzzle.

Also did you have difficulties to sit up? Was that because of vertigo? When we are not anticoagulated at all we have a lot of very odd symptoms.

"Sticky Blood Explained" by Kay Thackray is a very good book to better understand APS. She has also got heart-issues and neurolgical symptoms with her APS.

Please tell us how it goes for you. We learn so much from eachother here.

Best of Luck!

[GinaD]

There is increasing understanding of the relationship between the gut microbiome and autoimmune and hormone issues. I went gluten free after being nagged and nagged and nagged to try it by a non-medical professional friend of mine. And my life changed dramatically within a short week! Subsequent blood tests showed my IgG levels had dropped from sky high to what one doctor called" boring," i.e., normal.

Also, you might investigate the newly discovered Mast Cell Activation Syndrome.

And your issues with doctors who won 't listen certainly resonates with me! Having one's symptoms summarily dismissed ( if the doc can't "name it and blame it and tame it" then those symptoms must not really exist,) is almost as bad as the undiagnosed symptoms themselves.

APS ( and Mast Cell issues) can exhibit a stunning variety of symptoms. Most practitioners can only identify the most usual symptoms. But docs experienced in treating APS have seen a lot and are more likely to " name it."

To return to my first paragraph, gluten the " indigestible protein," has been linked to an amazing smorgasbord of chronic illnesses. But in order to nail down a possible APS diagnosis, you should consult with an APS experienced doc for more blood work before trying a gluten free diet. Or not - if you can't see an APS doc soon. My body's welcoming response to a gluten free diet has been amazing!

[MaryF Administrator in reply to GinaD]

Yes me too with mast cell disease and also gluten free for years and years now. MaryF

[GinaD]

I didnt get all the way through " Never Bet Against Occam" before my intense distant learning class resumed. But my class takes a break in a couple of weeks and I intend to re-hit that book.

[Cinderella72]

To me it sounds like you may have pulmonary hypertension with possible congestive heart failure. I had very similar symptoms back in 2014 and after a year of testing was finally diagnosed. It took 4 doctors and 2 hospitals to finally get me to a pulmonologist. In 2017 I had a major surgery removing 4 blood clots from my lungs. This was the best thing in the world as I was able to return to my normal life. I am now dealing with this again and also have very high pressure in my lungs which is pushing in the right side of my heart causing the congestive heart failure. I suggest finding a pulmonologist and hematologist ti get better testing. I wish you luck, there are answers out there!

[Lure2 in reply to Cinderella72]

Hi Cinderella72,

Welcome!

As you joined today I wonder if you have had a diagnose of Antiphospholipidsyndrome?

I have APS and also 2 leaking heartvalves and Pulmonary Hypertension (stable).

I wonder why you do not mention anything about anticoagulation? With my APS-diagnose and symptoms above (in some rare cases a symptom of APS) I need Warfarin with an INR of 4.0 to be ok.