Gather and Post Here Your Medical Tests Results - Discussion Thread

[Nas]

I think unsuccessful trail with cox inhibitors and no sign of immune deficiency in my case rules out Nanna's theory for my case. For me there is clear auto-immunity present, but I am not sure how this auto-immunity results in brain symptoms. This is one of the mysteries that I have to decode for my case.

[Nas]

I wonder how crazy the idea that all of these inhibitory symptoms of the brain are all caused by elevation in estrogen?

[Vandemolen]

Bad news: more than 10 types of my anti-PNECS is too low. PNEC is pulmonary neuroendocrine cell. I have not talked with my doctor yet. I have an appointment for next month but I saw my results at the website of the hospital. PNEC is associated with tumors. But is that when PNEC is too high or too low? When I googled I also saw that someone with CFS has low PNEC. After a vaccin of Haemophilus influenzae type B his PNEC has rised.

Good news: I tested negative for two kinds of tumors. The immunologist said it was ok that my anti-pnecs are low. If there was not any, then it would be problem. The bad news is that he sended me back to my family doctor. He said there is no immune problem for my hot flushes. Because the hot flushes come when I lean my back on the bench or couch it might have to do with the joints. My SI joint is swollen and I can feel there is a small ball. So I will aks my family doctor to look into that. The doctor already said that the small ball is no tumor.

[fernab]

No so bad news then.... which is the SI joint?

[Vandemolen]

The sacroiliac joints are in the lower back.

[fernab]

Ok. Now I understand.

Do you have any idea of which could you cause this flushes when you lean your back?

[Vandemolen]

Ok. Now I understand.

Do you have any idea of which could you cause this flushes when you lean your back?

Maybe my SI joints are infected. So when there is pressure on it my lower back gets warm. I hope my doctor will give an injection so the pain will go away and then maybe also the burning sensation.

This started with POIS. After a long day of work I masturbated at home for more than 3 hours. Sitting in 1 position. Maybe too much info haha but now you know why my joints got a major blast. I was also on antibiotics and that is very bad for the joints.

[fernab]

You don't think that maybe It could be due in some way to POIS?

You think it's more because of something other than POIS? (Infection as you suggest?).

I mean specifically this problem you feel on your SI joint when putting pressure on it?


Please, let me know any update you have when visiting your Doctors about your case.If you don't mind, of course. I am really interested.

[Vandemolen]

POIS could play a role. Because there are others who have joint problems because of POIS. But there are other POIS-patients who do not have a joint pain. So that is why I am not sure. And there are also other POIS-patients who have hot flushes. I have joint and muscle pain since my POIS started almost 20 years ago. But the hot flushes came just 5 years ago. I think beacuse 5 years ago I started using a lot of antibiotics. So my joints get more tense. And also I just masturbate for too long. That is because I get POiS and the next time is about a month. So I delay the O. I know, not so smart.

Yes about a few days I will give an update here about the diagnose of my family doctor. Do you have similair problems?

[fernab]

Yes, because of putting pressure. It began on testicles and perineal area. But after my last ejaculation the 'sensible area' to pressure has extended to buttocks and lumbar area. And after that I began to have pain also in the SI joint...

Maybe your case is not exactly the same, but would like to know any update. Thank you!

[Vandemolen]

Yes, because of putting pressure. It began on testicles and perineal area. But after my last ejaculation the 'sensible area' to pressure has extended to buttocks and lumbar area. And after that I began to have pain also in the SI joint...

Maybe your case is not exactly the same, but would like to know any update. Thank you!

Could it be that your pain is caused by The Pudendal nerve? My problems started 5 years ago. I remember that on a holiday I sat on a bike for 10 hours and at the end of the day I fell hard on my back. Maybe that could be my trigger?

Maybe I have chronic pelvic pain syndrome. The symptoms of patient 2 look like mine.

https://academic.oup.com/ptj/article/90/12/1795/2737819

[Vandemolen]

You don't think that maybe It could be due in some way to POIS?

You think it's more because of something other than POIS? (Infection as you suggest?).

I mean specifically this problem you feel on your SI joint when putting pressure on it?


Please, let me know any update you have when visiting your Doctors about your case.If you don't mind, of course. I am really interested.

My family doctor could not help me. The doctor does not think my symptoms is because of my SI joint. For my joint
I have to go to fysiotherapist. The doctor asked if I had fever. I said I do not think so, but I get really warm. She smiled. I said, but I can see that my neck, ears and chest get very red.

The doctor sended me to an internist. When I listened to the doctor I think she is thinking about somatically insufficient certified physical complaints. In other words she thinks it is something psychological. I do not want to rule anything out. So I made an appointment with a psychosomatic fysiotherapist.

[fernab]

is the story of always with POIS .... quite possibly the internist will end up asking you to go see a psychiatrist. In that case, do not be offended or surprised. because POIS is 'invisible' to doctors ... they will not take you seriously if it turns out that what is happening to you is due to POIS.

It is what happened to me....

Please keep me updated if you don't mind, please!

[Vandemolen]

These are my test results for some hormones.

This test is from may 2018. I had not had any kind of emition before this test. I think I was in abstinence like right now:

FSH: 4.53 mUI/ml
LH: 2.97 mUI/ml
Progesterone: 0.19 ng/ml (LOW in men should be between 0.28 and 1.22
Prolactine: 13.70 ng/ml (in my test 13.2 is the upper limit, so seems to be a bit HIGH)
Testosterone: 4.18 ng/ml
Free testosterone: 9.7 pg/ml
Cortisol: 10.74 ug/dl

I found those results. Prolactine included. But all are normal. Except for progesterone that was LOW.

Could that be linked to POIS in any way?

Your testosterone is low. Maybe your non arousal triggers have to do with low testosterone? And your sled accident could have given psychisomatic problems. Maybe you thought it was because of the accident but it was low testosterone?

I also blamed antibiotics for my hot flushes, but I think low testosterone is my problem. I did not eat meat since I was a kid. When I was 18 I started feeling depressed for no reason. My problems became bigger when I stopped doing sports and I gained 20 kg. That must have had a bad effect on my testosterone and maybe also POIS. My POiS became bad in 2010. It was then when I did a bloodtest for testosterone for the first time. It was 11. I has to be above 12.

It is too bad that some people filled in ‘normal’ behind their testosterone level at the blood test topic. Because 12 is also normal, but a bit low. There are men who have normal levels, but they have the symptoms related to low testosterone. On a Dutch website I read that a guy had level 15, but his doctor gave him TRT. He said he felt much better. Described it like he had a different body.

[Nas]

I really wish we had access to brain scans beyond just simple MRI and ECG. Stuff like neuroimaging, a scan with a functional or metabolic sensitivity beyond a simple CT or MRI,  single photon emission computed tomography, etc.
It's so frustrating though when doctors are just not willing to further investigate this illness even though it is ruining most of our lives.
If any has contact with university connected neurologists please either visit them or share their contact information. And please if you have access to it. Do further tests than MRI's or ECG's.

[Nas]

I think we have to be cautious when drawing results from a single hormone test at a special time of the day. Hormones levels can fluctuate hugely over 24 hours. When we come out in the daylight cortisol levels skyrock. But that doesnt mean they are normal at night. The same is probably true with testosterone. I took my testerone at ZRT lab and a mean value was calculated on many test points during the day. The most optimal should be to compare 24 hour curves on hormon levels with normal curves.

Regarding this comment, usually the range that is given by the lab is the clinically significant range for illness diagnosis. So yes hormones, especially androgens, fluctuate but the range decides whether it is considerable for therapy or not.

[fernab]

I think we have to be cautious when drawing results from a single hormone test at a special time of the day. Hormones levels can fluctuate hugely over 24 hours. When we come out in the daylight cortisol levels skyrock. But that doesnt mean they are normal at night. The same is probably true with testosterone. I took my testerone at ZRT lab and a mean value was calculated on many test points during the day. The most optimal should be to compare 24 hour curves on hormon levels with normal curves.

I moved your post here. Since this is the correct thread to discuss any result in the other thread...

[fernab]

Thank you BoneBroth!!!

Very interesting information!!!

[Vandemolen]

I had a new blood test because of low testosterone. My free testosterone dropped a bit more, but still in the normal range. I am seeing an urologist about two weeks.

Testosterone: 11. RR: 10-30
Free testosterone: 280. RR: 174-729
SHBG: 21. RR: 13-71
LH: 2.0. RR: 1.5-9.3
FSH: 3.3. RR: 1.4-18.

[Muon]

We should take a look at unique mediators of eosinophils to rule out activation of these cells. They play a role in non-IgE mediated allergies. Since a bunch of members are hypersensitive to food as well, it might be relevant to test these mediators.