Gather and Post Here Your Medical Tests Results - Discussion Thread

[certainlypois2]

I had a standard brain mri that was clear. My only question is if tracer dye is used  can that make a difference in result.

[Muon]

I've had a brain MRI which was fine as well.

[demografx]

Me too

[Nas]

So this rules out encephalitis. What else causes brain fog then?

[Muon]

I went to an optometrist today and it turns out I have inflammation to the Meibomian glands, this causes dry eyes.
https://en.wikipedia.org/wiki/Meibomian_gland

[fernab]

Hi Muon, I have exactly the same since I began to have POIS... I think the Medical term used for this condition is blepharitis....

[fernab]

Before POIS I was not sensible to gluten.
Some antibodies against gluten were synthetised by my immunological system.

I am in abstinence since 7 months. And I noticed something. When I finish peeing I sometimes notice that I have some seminal fluid diluted in the pee. There was an occasion when the exit of a dense thread was very clear, as is usually the case with semen. Besides something sticky. But it does not affect me at all. This releases without orgasm do not activate my POIS. Does that means that orgasm adds something at the level of the nervous system? It is arousal necessary to activate POIS? I think the nervous system intervenes in some way in the activation of POIS.

This remembers me when I read a member's post in this forum explaining that he noticed that his POIS was not so strong if he released with a low level of arousal.

To resume: inmune system, nervous system and maybe neurotransmiters, hormones and some other chemical messengers could play a role on POIS. Very similar to the title of the NORD research program. Hope researchers will contribute a bit more to know how this horrible disease works.

[Vandemolen]

I am in abstinence since 4 months. I do not have NE. But sometimes when I am in bed an aroused the next morning I can see there is a little bit of seminal fluid on boxers. Most of times in this situation I get mild POIS symptoms. But when I masturbate without ejaculation my POIS is worse then when I ejaculate. The amount of precum is much bigger in that case. Maybe that is the reason why I get POIS-symptoms.

[fernab]

Nervous system and inmune system are related.

I found this information:

Precisely, the authors of an article published in the Journal of Experimental Medicine1, explain how nerve signals transmitted through the vagus nerve could be part of an "inflammatory reflex". This means that there is a neural circuit that is capable of modulating immune responses. These inflammatory reflexes would be responsible for maintaining immunological homeostasis, that is, maintaining the balance of the immune response, since an excess or lack of activity can cause diseases

[fernab]

More info on that sense:

We have known for some time that there is a connection between our nervous system and our immune system. Since the discovery of the anti-inflammatory action of some hormones, there have been major advances in the field of psychoneuroimmunology. Among them, some studies have revealed the presence of nerve endings near immune cells, such as T or B lymphocytes, in organs of the immune system, such as the thymus, lymph nodes or spleen.

It is important to know that the T lymphocytes of a specific individual can only detect an antigen if it is presented by an antigen-presenting cell and if it is associated with the major histocompatibility complex (MHC) I or II. Therefore, in the thymus, a process of selection of lymphocytes capable of exercising said function takes place. Only T lymphocytes that have receptors that allow interaction with said molecules (positive selection) will survive. During this process the T lymphocytes are bound to the CMH I molecule or to the CMH II, and depending on which molecule they interact with, they will differentiate and give rise to two different lymphocyte populations, CD8 + and CD4 + respectively.

In a second step, the T lymphocytes whose receptors show a very high affinity for the self antigens (autoantigens) presented by the CMH molecules will be eliminated, since otherwise autoimmune diseases could occur. In this way it is ensured that the T lymphocytes do not attack their own antigens (self-tolerance).

https://en.m.wikipedia.org/wiki/Thymus

[fernab]

Maybe this second step is failing somehow... Causing autoinmune diseases. I also think hormones (endocrine system) is at the same time linked to nervous and inmune system.

We tend to think about them as separated systems. Because medicine is structured like this. To study each separately. But in a human body every systems works together as a whole.

[fernab]

Vandemolen,

I also have POIS symptoms with only precum presence. No need orgasm. This leads me to think arousal is something connected to POIS trigger. Precum is a liquid that is getting out from  bulbourethral glands or cowper glands. This glands are just below the prostate. And suppose the nervous system as a consecuence of arousal is the responsible of 'opening' (or activating those glands).

[nanna1]

So this rules out encephalitis. What else causes brain fog then?

Hi Nas, I agree, POIS is not associated with autoimmune encephalitis. My three MRIs were all normal, but my angiograms are not normal. Several POISers have immune deficiencies which seems to contradict the autoimmunity theory. Also the autoimmunity test from several POISers are negative.

   Autoimmunity test
--4 of us have normal autoimmune panel test (nanna1, quotz, Vandemolen, muon).
--1 of us show possible autoimmunity (Iwillbeatthis), correlated with positive EBV (HHV-4) infection
--1 of us show normal/negative autoimmune antibody test for onconeural antibodies, insulin, peripheral NMDA-receptor, adrenal-cortex, potassium channel, glutamic acid decarboxylase (Muon's brother)

--------------------------

It is important to know that the T lymphocytes of a specific individual can only detect an antigen if it is presented by an antigen-presenting cell and if it is associated with the major histocompatibility complex (MHC) I or II.

Hi fernab, have you looked into natural killer (NK) cells?
"The role NK cells play is analogous to that of cytotoxic T cells in the vertebrate adaptive immune response. NK cells provide rapid responses to virus-infected cells, acting at around 3 days after infection, and respond to tumor formation. Typically, immune cells detect major histocompatibility complex (MHC) presented on infected cell surfaces, triggering cytokine release, causing lysis or apoptosis. NK cells are unique, however, as they have the ability to recognize stressed cells in the absence of antibodies and MHC, allowing for a much faster immune reaction." (https://en.wikipedia.org/wiki/Natural_killer_cell)

[Muon]

Hi Muon, I have exactly the same since I began to have POIS... I think the Medical term used for this condition is blepharitis....

Yes and it's also responsible for a burning sensation on the surface of my eyes. I suspect there is also inflammation of the sebaceous glands of the skin, since I get some sort of acne and a dry or fatty skin in POIS. This diagnosis was more of a coincidence since I visited the optometrist for floaters and eye pain/pressure. Eye pressure is normal, I'm being told that the pain inside the eyes probably is related to blood vessels or something else but not fundamentally related to the eye itself.

[fernab]

Hi fernab, have you looked into natural killer (NK) cells?

Hi Nanna1,

I just read on Wikipedia about the Natural Killer Cells. and indeed I see that it is very related to the Post that I have writen. In fact, it is also commented in Wikipedia that immature T cells migrate to the thymus gland to end maturation.

Anyway. Although nothing can be assured until proven, I have always had a good state of health. except for stationary allergy to pollens.

It is the only thing that has affected me every spring since I was very small. From 5 or 6 years old.

POIS arrived to my life around 40 years old. Before POIS, only pollen allergy was my only Illness (something with which I could live without any problem).

When POIS began. I also began to have digestive problems I never had before.

Now I have been diagnosed to be sensible to gluten. But not celiac. Duodenal biopsies (more than one). Genetic analysis DQ2-DQ8. Discard that I am a pure celiac. However, my immune system has developed some, only some antibodies against gluten.

1.- antibodies related with celiac disease:
   anti tTG + anti DPG (IgA+IgG):
       - september 2015: 39.1 (positive)
       - march 2016: 128 (positive)
       - march 2018: 234 (positive)
       - january 2019: 255 (positive)

2.- anti DPG IgA:
      - march 2018 12 U/ml (positive for the first time, previously negative).
      - january 2019 108 U/ml (positive).

All other celiac antibodies have been always negative.

The Dr of digestive system that keeps track of these antibodies
Told me last 14 February that I am sensible to gluten. She told me that this is an autoinmune condition.

An inmunologist I visited during several months told me the same. And an expert with more than 30 years of experience in diseases related to gluten told me also I am sensible to gluten.

And I have read in this forum that there are several members who also have developed problems with gluten since they have POIS. This is why I link POIS with autoinmune condition. When I was visiting my inmunologist. He searched me a lot of other posibles autoinmune Illness or antibodies. He only found that I also have developed some anti insuline antibodies. But nevertheless this anti insuline antibodies he told me I am not diabetic.

This inmunologist also did me a test to get a detailed study of my lymphocyte population including all the Natural Killers. Can give you more detail of this test if you want....

[fernab]

Hi Muon, I have exactly the same since I began to have POIS... I think the Medical term used for this condition is blepharitis....

Yes and it's also responsible for a burning sensation on the surface of my eyes. I suspect there is also inflammation of the sebaceous glands of the skin, since I get some sort of acne and a dry or fatty skin in POIS. This diagnosis was more of a coincidence since I visited the optometrist for floaters and eye pain/pressure. Eye pressure is normal, I'm being told that the pain inside the eyes probably is related to blood vessels or something else but not fundamentally related to the eye itself.

Hi Muon, I have had exactly the same problems you are describing on my eyes. Burning sensation on eyes suface. Redness. feeling of grit in the eyes. Internal eyes pressure feeling.

And I have been said many many times that I have sebaceous problems on my skin. in several places of the head. right eyebrow and eyebrow. scalp on the left side. skin flaking on ears. outside and inside. curiously all this on my skin only happens to me since I started having POIS. before, none of that ever happened to me. and it is more. when the symptoms of POIS are stronger. all these cutaneous manifestations also increase. I have tried many times to explain to doctors (even dermatologists). but we already know that the current capacity of doctors to associate certain things with POIS leaves much to be desired...

So it always been left in sebaceous and other problems without any possible connection to POIS. I suppose this is mainly due to the immense ignorance about this odious disease from the world of medicine in general.

[Muon]

Anyway. Although nothing can be assured until proven, I have always had a good state of health. except for stationary allergy to pollens.

It is the only thing that has affected me every spring since I was very small. From 5 or 6 years old.

POIS arrived to my life around 40 years old. Before POIS, only pollen allergy was my only Illness (something with which I could live without any problem).

It sounds like atopy developing into POIS or POIS being part of an atopic condition. Many others had allergies or sensitivities when they were young before pois started to happen.

[fernab]

Yes Muon. POIS is somehow influencing on my inmune system. At least in my case. And I think also in many others. although so it seems not to all poisers.

[Muon]

I think I'm fucked for the rest of my life. Scientific progress is too slow. I'm 33 years old now, maybe we will have a cure when I hit 50 or 60 and that's optimistic. POIS has been discovered around 2001 and there hasn't been found a single biomarker yet (there hasn't been much research done though).

[fernab]

I do not want to give you false hopes. since it could happen as you are saying. but I think you have to be prepared for the worst and think about the best.

I mean: one thing is the cure. And other very different is to be able to find something. That reduces as much as possible pois symptoms. Some poisers had reached it. It is not my case for the moment... Don't give up Muon.... Lets think we will be able to find something before the cure finally arrives.... My situation is also very unstable right now.

My work is at Risk to be loosed. As well as my relathionship.... I feel my life hangs on a thread.....

But I have no other chance better than fight this Illness while I can... And thinking I am not alone.... it makes it a bit more bearable....