Poll

What other condtions do you have or did you have?

Adhesive Capsulitis (Frozen shoulder)
0 (0%)
Allergies (Elevated IgE or IgG4)
10 (4%)
Anaphylaxis
2 (0.8%)
Aneurysm (any type)
0 (0%)
Angioedema/hereditary angioedema (HAE)
1 (0.4%)
Anorgasmia
2 (0.8%)
Arthritis (incl RA)/Synovitis
2 (0.8%)
Asthma
3 (1.2%)
Atherosclerosis
0 (0%)
Autism/Autism spectrum disorder (ASD)
2 (0.8%)
Bell's Palsy
1 (0.4%)
Blepharitis
2 (0.8%)
Cancer
0 (0%)
Carpal tunnel syndrome
0 (0%)
Chronic inflammatory response syndrome (CIRS)
2 (0.8%)
Celiac disease
2 (0.8%)
Complex regional pain syndrome
0 (0%)
Coronary artery disease
0 (0%)
Crohn's disease
0 (0%)
Diabetes
0 (0%)
Dysautonomia
5 (2%)
Dyslipidemia (Hypercholesterolemia etc)
2 (0.8%)
Ehlers-Danlos Syndrome (EDS)
0 (0%)
Endothelial Dysfunction
1 (0.4%)
Eosinophilic disorders (Eosinophilic colitis, esophagitis, GI disease, eosinophilia)
1 (0.4%)
Epstein-Barr Virus (EBV) infection
4 (1.6%)
Experimental allergic encephalomyelitis (EAE)
0 (0%)
Fibromyalgia/Fibromyalgia syndrome (FM/FMS)
2 (0.8%)
Floaters/Mouches Volentes
7 (2.8%)
Food protein induced enterocolitis syndrome (FPIES)
0 (0%)
Gastroesophageal reflux disease (GERD)
6 (2.4%)
Gastroparesis
2 (0.8%)
Gulf War Illness (GWI)
0 (0%)
Heart attack
0 (0%)
Hives (Urticaria)
3 (1.2%)
Hypertension
4 (1.6%)
Hypogonadism
2 (0.8%)
Hypotension
2 (0.8%)
Infection (Bacterial)
10 (4%)
Infection (Fungal)
10 (4%)
Infection (Parasitic)
1 (0.4%)
Infection (Viral)
13 (5.2%)
Inflammatory bowel disease/Colitis (IBD)
3 (1.2%)
Interstitial cystitis/bladder pain syndrome (IC/BPS)
2 (0.8%)
Irritable bowel syndrome (IBS)
18 (7.2%)
Kounis syndrome
0 (0%)
Kidney disease
1 (0.4%)
Lactose intolerance
7 (2.8%)
Liver disease/hepatitis/Gilbert's syndrome
1 (0.4%)
Lupus (Systemic lupus erythematosus (SLE))
0 (0%)
Lyme Disease/Post-Lyme syndrome
2 (0.8%)
Malabsorption
7 (2.8%)
Mast Cell Activation Syndrome (MCAS)
1 (0.4%)
Mastocytosis/Cutaneous Mastocytosis
0 (0%)
Mold Illness/Toxicity
0 (0%)
Multiple chemical sensitivity syndrome (MCSS)
2 (0.8%)
Multiple sclerosis (MS)
0 (0%)
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
5 (2%)
Myeloproliferative diseases (MPD)
0 (0%)
Neuropsychiatric Disorders (Anxiety, major depression disorder)
9 (3.6%)
Non-celiac gluten sensitivity (NCGS)/Non-celiac wheat sensitivity (NCWS)
5 (2%)
Obsessive-compulsive disorder (OCD)
10 (4%)
Osteoporosis/Osteopenia
0 (0%)
Periodontal disease/periodontitis
2 (0.8%)
Postural orthostatic tachycardia syndrome (POTS)
6 (2.4%)
Post-traumatic stress disorder (PTSD)
3 (1.2%)
Premature ejaculation (PE)
14 (5.6%)
Prostatitis
8 (3.2%)
Raynaud syndrome
1 (0.4%)
Restless legs syndrome
5 (2%)
Retrograde ejaculation
0 (0%)
Sinusitis/(allergic) Rhinitis
7 (2.8%)
Sjogren's Syndrome
3 (1.2%)
Sleep apnea
4 (1.6%)
Small intestinal bacterial overgrowth (SIBO)
3 (1.2%)
Spinal cord injury
1 (0.4%)
Tennis/Golfer's Elbow
5 (2%)
Thyroid disease
3 (1.2%)
Ulcerative colitis
2 (0.8%)
Other (elaborate in the comments)
3 (1.2%)
None, I only got POIS
3 (1.2%)

Total Members Voted: 42

Author Topic: List of conditions  (Read 5510 times)

Muon

  • Hero Member
  • *****
  • Posts: 2367
    • MCAD Thread
List of conditions
« on: January 15, 2020, 10:16:00 AM »
Special selection plus random stuff. Votes can be changed anytime.

Let me know in the comments if you want me to add a condition/disease/disorder to the poll list.
« Last Edit: February 09, 2020, 09:57:20 AM by Muon »

marrtintintin

  • Newbie
  • *
  • Posts: 47
  • Life without POIS.... so much power to be won
Re: List of conditions
« Reply #1 on: February 03, 2020, 02:33:12 PM »
Thank you! I have to check a few of those illnesses bcs I don?t know most of them and their actual symptoms...Maybe I can make a list providing the hyperlinks? Let me know Mon :)
I think that the big amount of technical terms on the list prevent people from considering if they suffer from any of these illnesses. For example, I didn?t know what IBS was until I researched it yesterday, and I probably have IBS, I just didn?t  know it was an illness.  Same, with the rest of those terms, I don?t know the symptoms for each of those illnesses.
Similarly, you probably didn?t know what POIS was until you read the description of POIS and said WoW, finally!) (at least, this was my case)
Therefore, it might be worth looking into the terminology and checking if you have any of those symptoms, and then check with a specialist. And complete the survey again.

Let me know your thoughts. Thanks again!
« Last Edit: February 04, 2020, 04:01:17 PM by marrtintintin »
So happy to be part of this community! Just a year ago, I was alone, nobody understood my “unreal” symptoms.
Digestion problems anyone? (I.e. using toilet every 3+ days) My POIS began as a teenager together with digest
POIS (13 or 7): photophobia, bloating, heavy brain fog, memory loss, muco

demografx

  • Administrator
  • Hero Member
  • *****
  • Posts: 5631
  • All of us working together to defeat POIS!
Re: List of conditions
« Reply #2 on: February 03, 2020, 03:14:50 PM »
Marrtintintin, your points are very well taken and very well expressed!
Demo
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Muon

  • Hero Member
  • *****
  • Posts: 2367
    • MCAD Thread
Re: List of conditions
« Reply #3 on: February 05, 2020, 04:00:00 PM »
Maybe I can make a list providing the hyperlinks?
Sure, if you got time on your hands you may make a list of hyperlinks which redirects to wikipedia's page for that condition https://en.wikipedia.org/wiki/Main_Page

You can place the same order of the list, but hyperlinked, in the comments section.

marrtintintin

  • Newbie
  • *
  • Posts: 47
  • Life without POIS.... so much power to be won
Re: List of conditions
« Reply #4 on: February 05, 2020, 05:26:25 PM »
Top, muon, thanks! I hope to find the time hahha 80 illnesses!
So happy to be part of this community! Just a year ago, I was alone, nobody understood my “unreal” symptoms.
Digestion problems anyone? (I.e. using toilet every 3+ days) My POIS began as a teenager together with digest
POIS (13 or 7): photophobia, bloating, heavy brain fog, memory loss, muco

Muon

  • Hero Member
  • *****
  • Posts: 2367
    • MCAD Thread
Re: List of conditions
« Reply #5 on: February 06, 2020, 12:17:20 PM »
Bream's hBD-2 can indicate mucosal inflammation, this could lead to malabsorption which can be shown by his low vitamin levels.

The result of this thread so far seem to indicate that IBS is a factor.

''The results indicate significantly elevated levels of HBD-2 in patients with IBS compared with HCs and similar to those with active UC. The results support an activation of the mucosal innate defense system toward a proinflammatory response in IBS patients in the absence of macroscopic signs of inflammation.''

Elevated Human β-Defensin-2 Levels Indicate an Activation of the Innate Immune System in Patients With Irritable Bowel Syndrome

''faecal levels of HBD-2 were significantly raised in patients with irritable bowel syndrome compared with healthy controls and were similar to those in the patients with ulcerative colitis. These results suggest activation of the mucosal innate defence system towards a proinflammatory response in patients with irritable bowel syndrome, in the absence of macroscopic signs of inflammation.''

Activated innate immune system in irritable bowel syndrome?

Table 2. Biomarker candidates in IBS:

Irritable bowel syndrome: towards biomarker identification

My brother got abnormal serotonin levels. 90% is being produced in the gut. It's also listed in table 2.

My oral mucosa seem to activate on stress. No pain, but I can literally feel activity.
« Last Edit: February 06, 2020, 12:28:40 PM by Muon »

marrtintintin

  • Newbie
  • *
  • Posts: 47
  • Life without POIS.... so much power to be won
Re: List of conditions
« Reply #6 on: February 07, 2020, 09:15:26 AM »
Woow, this is so interesting Muon. I also oral mucosa and in my es all year-round. Would it be good to visit any type of doctor about irritable bowel syndrome? My stomach Is really giving me a hard time these days, specially when sleeping.
So happy to be part of this community! Just a year ago, I was alone, nobody understood my “unreal” symptoms.
Digestion problems anyone? (I.e. using toilet every 3+ days) My POIS began as a teenager together with digest
POIS (13 or 7): photophobia, bloating, heavy brain fog, memory loss, muco

Muon

  • Hero Member
  • *****
  • Posts: 2367
    • MCAD Thread
Re: List of conditions
« Reply #7 on: February 09, 2020, 09:55:24 AM »
Would it be good to visit any type of doctor about irritable bowel syndrome?
I'm not in a position to recommend you anything.

To all of the readers: Let me know in the comments if you want me to add a condition/disease/disorder to the poll list.

Muon

  • Hero Member
  • *****
  • Posts: 2367
    • MCAD Thread
Re: List of conditions
« Reply #8 on: February 18, 2020, 08:05:31 AM »
"However, there have been a number of reports of increased number of mast cells in the intestine of patients with SM [132], but also in the absence of SM in which case they may be termed 'intestinal mastocytosis' [133]." Ref

Muon

  • Hero Member
  • *****
  • Posts: 2367
    • MCAD Thread
Re: List of conditions
« Reply #9 on: February 22, 2020, 01:20:15 PM »
"...Irritable/inflammatory bowel syndrome (IBS) is commonly diagnosed by gastroenterologists consulting on MCAS patients..."

Presentation, Diagnosis, and Management of Mast Cell Activation Syndrome

Mast cell density is relatively high in mucosal interfaces like the gastrointestinal tract.




Muon

  • Hero Member
  • *****
  • Posts: 2367
    • MCAD Thread
Re: List of conditions
« Reply #10 on: February 25, 2020, 12:50:03 PM »
Intestinal Mucosal Mast Cells: Key Modulators of Barrier Function and Homeostasis

Could you replace the word 'intestinal' in the article title by 'Genitourinary'?
« Last Edit: February 25, 2020, 01:17:10 PM by Muon »

drop247

  • Full Member
  • ***
  • Posts: 244
Re: List of conditions
« Reply #11 on: February 26, 2020, 07:23:36 AM »
it remains a puzzle why so many MCs are located in the diencephalon, which regulates emotions and in the genitourinary tract, including the bladder, prostate, penis, vagina and uterus that hardly ever get allergic reactions


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4708553/

Nas

  • Hero Member
  • *****
  • Posts: 1081
Re: List of conditions
« Reply #12 on: February 26, 2020, 07:30:07 AM »
it remains a puzzle why so many MCs are located in the diencephalon, which regulates emotions and in the genitourinary tract, including the bladder, prostate, penis, vagina and uterus that hardly ever get allergic reactions


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4708553/
Their activation is probably the root cause for many of our symptoms.

drop247

  • Full Member
  • ***
  • Posts: 244
Re: List of conditions
« Reply #13 on: February 26, 2020, 09:19:13 AM »
I'm convinced our symptoms are mast cell activation. But mast cell activation is in itself a symptom. The question is why are they being activated. I'd much rather treat the root cause instead of treating the symptoms like modern medicine so often does.

Muon

  • Hero Member
  • *****
  • Posts: 2367
    • MCAD Thread
Re: List of conditions
« Reply #14 on: February 26, 2020, 09:45:05 AM »
I'm convinced our symptoms are mast cell activation. But mast cell activation is in itself a symptom. The question is why are they being activated. I'd much rather treat the root cause instead of treating the symptoms like modern medicine so often does.

Could be primary as in genetic defects or secondary. In the case of being secondary there are tons of things that can activate them like viral infections, dysbiosis, chronic stress, vagus nerve dysfunction etc. POIS could be a spectrum where MCAD is part of that spectrum while MCAD itself is able to induce an extreme large range of potential symptoms.

Clues

  • Full Member
  • ***
  • Posts: 241
Re: List of conditions
« Reply #15 on: February 26, 2020, 10:31:27 AM »
I'd much rather treat the root cause instead of treating the symptoms like modern medicine so often does.

This is driving me insane. It seems like most doctors here in Norway are completely incapable of doing any sort of big-picture analysis to find underlying causes of chronic disorders. I need to find a new doctor, but explaining the whole set of POIS symptoms again and potentially being taken for an idiot or hypochondriac is not tempting. :(

Muon

  • Hero Member
  • *****
  • Posts: 2367
    • MCAD Thread
Re: List of conditions
« Reply #16 on: February 26, 2020, 10:55:57 AM »
...and potentially being taken for an idiot or hypochondriac is not tempting. :(

And this doesn't help you either:
"Although most of the patients (72%) appeared chronically ill at some point, in general the studied patients appeared healthier than would be expected from their litanies of complaints" Ref.

Plus most symptoms are non-specific and relatively low-grade in nature which will contribute even more to the hypochondric picture in the mind of doctors. You need a different mindset as doctor to approach this disorder.

It seems like most doctors here in Norway are completely incapable of doing any sort of big-picture analysis to find underlying causes of chronic disorders.

It's the same everywhere. Health care fails when it comes down to chronic disorders. That's why these patients cost a lot of money. They will hop from one doctor to another. Tons of patients on a day for a doctor. You are just a number. They don't have time to digg into the big picture.
« Last Edit: February 26, 2020, 11:04:31 AM by Muon »

drop247

  • Full Member
  • ***
  • Posts: 244
Re: List of conditions
« Reply #17 on: February 26, 2020, 10:58:35 AM »
There is the possibility that the mast cell reaction to orgasm is a normal biological response. The genitourinary tract is full of mast cells for a reason. Possibly to ramp up the immune system to protect the body from infection obtained during sex with another person that has various bacteria. So why do we feel so bad if it's a normal response? I've heard the histamine levels of the body referred to as a "bucket". If the bucket overflows you feel bad. Our buckets might be full from various causes like leaky gut, food intolerances, systemic infections, chronic stress, sleep deprivation, etc, etc. Perhaps combinations of these things.

Muon

  • Hero Member
  • *****
  • Posts: 2367
    • MCAD Thread
Re: List of conditions
« Reply #18 on: February 26, 2020, 07:52:55 PM »
Interesting paper:

Small Intestinal Bacterial Overgrowth Is Common in Mast Cell Activation Syndrome

I'm not sure if people who have done the lactose hydrogen breath test have done a follow up lactulose methane+hydrogen breath test. MC mediators might lead to abnormalities in GI motility ---> bacterial overgrowth.

Clues

  • Full Member
  • ***
  • Posts: 241
Re: List of conditions
« Reply #19 on: February 28, 2020, 10:12:07 AM »
"Although most of the patients (72%) appeared chronically ill at some point, in general the studied patients appeared healthier than would be expected from their litanies of complaints" Ref.

Plus most symptoms are non-specific and relatively low-grade in nature which will contribute even more to the hypochondric picture in the mind of doctors. You need a different mindset as doctor to approach this disorder.

You really hit the nail on the head there, I don't know how many times I've had a baffled doctor or physiotherapist etc say "but you look healthy". Well I wasn't complaining about how I look. ::) When you have a healthy-looking individual with a healthy lifestyle, who has an array of chronic symptoms, that should be even more of a clue that something unusual is wrong and needs a deeper look. But it's easier for them to chalk it up to hypochondria etc.

In a bizarre way I'm glad we have the orgasm connection, otherwise I think doctors would be even more dismissive, as all the symptoms individually are very generic if you disregard the orgasm trigger.