[RD]

I have some recent tests here done for testing looking for a way to explain weight loss ...

You previously said you have Crohn's , weight loss is typical in that disease because of malabsorption, and/or reluctance to eat because it causes pain ...

Crohn's disease may manifest as weight loss, usually related to decreased food intake, since individuals with intestinal symptoms from Crohn's disease often feel better when they do not eat and might lose their appetite. People with extensive small intestine disease may also have malabsorption of carbohydrates or lipids, which can further exacerbate weight loss

http://en.wikipedia.org/wiki/Crohns_disease#Systemic

[Omen 30]

Friends start taking b12 supplements atleast 500 mcg a day.it will take time atleast a month for the results.get your blood serum tested after a month if not much difference then go for the shots.

[fornicationDENIED2]

I have some recent tests here done for testing looking for a way to explain weight loss ...

You previously said you have Crohn's , weight loss is typical in that disease because of malabsorption, and/or reluctance to eat because it causes pain ...

Crohn's disease may manifest as weight loss, usually related to decreased food intake, since individuals with intestinal symptoms from Crohn's disease often feel better when they do not eat and might lose their appetite. People with extensive small intestine disease may also have malabsorption of carbohydrates or lipids, which can further exacerbate weight loss

http://en.wikipedia.org/wiki/Crohns_disease#Systemic

Indeed, a CT scan was made to explain if I had a flare up (immune system attack causing inflammation, etc.). Maybe malabsorbtion of nutrients was the POIS problem all along. This could have caused  Now I need to find a way to justify the medical plan to cover further testing ( fake an illness?). I need now to fix the hormonal disaster Crohn caused. Reducind estrogen to bring down DHT and up Testosterone to healthy levels is the first step (I am a 18 year old with low testosterone, I already tested myself). Then find the mineral dosing appropriate to reduce acetycholine and increase GABA, wich requires testing. Not very sure about the testing required for finding out how to balance neurotransmitters though.

[RD]

... I need now to fix the hormonal disaster Crohn caused. Reducind estrogen to bring down DHT and up Testosterone to healthy levels is the first step (I am a 18 year old with low testosterone, I already tested myself).

If you really have low testosterone, that too, like Crohn's, is possible via small-vessel vasculitis , ( rather than a consequence of Crohn's ) ... http://www.ncbi.nlm.nih.gov/pubmed/18609261

( fake an illness?)

Faking anything is just going to muddy the waters and damage your relationship with your healthcare providers and health insurance, faking is a very bad idea.

[johanstefansson]

The symptoms last for two weeks. I have had this symptoms for about 15-18 years. I have contacted a expert in sexual medicine here in Stockholm. If you live in Stockholm or in Sweden, feel free to contact me.

Hi im from Sthlm too, what do you need help with?

[Jonas STHLM]

The symptoms last for two weeks. I have had this symptoms for about 15-18 years. I have contacted a expert in sexual medicine here in Stockholm. If you live in Stockholm or in Sweden, feel free to contact me.

Hi im from Sthlm too, what do you need help with?

I´m interested to know if you have seeked treatment, if so were? Have you have had any success? If you want you can PM me in swedish.

[johanstefansson]

Last year i seeked treatment only to be met by complete ignorance, this fall i have an apointment with a allergy specialist doctor.

[Jonas STHLM]

Last year i seeked treatment only to be met by complete ignorance, this fall i have an apointment with a allergy specialist doctor.

Interesting, i have looking for a allergy specialist doctor in Stockholm, are you willing to share who you are going to?

I have seeked treatment at the centre for andrology and sexual medicine Karolinska Huddinge.

/J

[fornicationDENIED2]

... I need now to fix the hormonal disaster Crohn caused. Reducind estrogen to bring down DHT and up Testosterone to healthy levels is the first step (I am a 18 year old with low testosterone, I already tested myself).

If you really have low testosterone, that too, like Crohn's, is possible via small-vessel vasculitis , ( rather than a consequence of Crohn's ) ... http://www.ncbi.nlm.nih.gov/pubmed/18609261

( fake an illness?)

Faking anything is just going to muddy the waters and damage your relationship with your healthcare providers and health insurance, faking is a very bad idea.

The vascularity of my intestines  was normal after a colonoscopy study. Also, the most probable cause of my Crohns was heavy antibacterial medication when I was six years old after a Vesicoureteral reflux surgery( because Secondary vesicoureteral reflux is due to a urinary tract malfunction, often caused by infection.) promoting  bad bacteria proliferation and a violent immune response or that I have Celiac disease excacerbated by Nsaids. I used to have asthma though, around that age too, vasculitis can cause that. I have no pysical direct indications of vasculitis, and I can't afford testing vasculitis.

[RD]

The vascularity of my intestines  was normal after a colonoscopy study

Crohn’s does not necessarily affect the colon , it can be confined the small intestine [it can be “ileal”]. Nor need active disease be permanently present.

... my Crohns ... I have Celiac disease

Celiac or Crohn’s is more likely to be true than Celiac+Crohn’s . There are blood tests to confirm Celiac …

Celiac disease can be confused with irritable bowel syndrome, iron-deficiency anemia caused by menstrual blood loss, inflammatory bowel disease, diverticulitis, intestinal infections, and chronic fatigue syndrome. As a result, celiac disease has long been underdiagnosed or misdiagnosed. As doctors become more aware of the many varied symptoms of the disease and reliable blood tests become more available, diagnosis rates are increasing.

Blood Tests

People with celiac disease have higher than normal levels of certain autoantibodies—proteins that react against the body's own cells or tissues—in their blood. To diagnose celiac disease, doctors will test blood for high levels of anti-tissue transglutaminase antibodies (tTGA) or anti-endomysium antibodies (EMA). If test results are negative but celiac disease is still suspected, additional blood tests may be needed.

Before being tested, one should continue to eat a diet that includes foods with gluten, such as breads and pastas. If a person stops eating foods with gluten before being tested, the results may be negative for celiac disease even if the disease is present.

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/

There are also blood tests for vasculitis , e.g. ANCA test ...

p-ANCA with specificity to other antigens are associated with inflammatory bowel disease, rheumatoid arthritis, drug-induced vasculitis, autoimmune liver disease, drug induced syndromes and parasitic infections. Atypical ANCA is associated with drug-induced systemic vasculitis, inflammatory bowel disease and rheumatoid arthritis

http://en.wikipedia.org/wiki/Anti-neutrophil_cytoplasmic_antibody#Disease_associations

[NB:  ANCA-Negative vasculitis is possible ]

I have no pysical direct indications of vasculitis, and I can't afford testing vasculitis.

Free test #1: keep an eye out for "splinter haemorrhages" ...


http://www.hopkinsvasculitis.org/types-vasculitis/microscopic-polyangiitis/

Free test #2 : petechiae  https://en.wikipedia.org/wiki/Petechia

Free test #3: frothy urine can be caused by vasculitis ... http://en.wikipedia.org/wiki/Proteinuria

[johanstefansson]

I have splinter hemorrhages. Not as much today but more some years ago.

[RD]

I have splinter hemorrhages. Not as much today but more some years ago.

If not due to trauma, (e.g. hitting the wrong nail with a hammer), then you should definitely report [recurring] splinter haemorrhages to your doctor. [ Take some pictures of them with the date on to show your doctor ].

[shen mue]

since last year I felt stabbing in the bladder/prostate area half an hour after arousal without an 'O'
this happens only 3 times max

does anyone have had a similar experience, did I harm my bladder/prostate or is it a muscle nerve problem?

I've never had pain or POIS symptoms from sexual activity that doesn't end in orgasm.

Rarely if I have two orgasms quickly in a row within only a few minutes I get an intense, unbearable, burning pain that I suspect is originating from my prostate. The pain is so strong that I'll need to drink 3-5 beers in order to make it disappear and it usually lasts for about an hour or maybe 2. I've noticed that this pain is also more likely to occur if I have an ejaculation soon after drinking alcohol. It has only been happening the last 2-3 years so it started 3-4 years after my POIS developed.

I have some CPPS and Hard Flaccid and what the two of you describe sounds exactly like some minor symptoms of it. I recommend going for a walk afterwards, doing some soft yoga or doing some internal trigger point massage in your pelvic floor. sounds uncomfortable, but if the pain gets worse it should do the trick (at least it does for me)...

[RD]

since last year I felt stabbing in the bladder/prostate area half an hour after arousal without an 'O' this happens only 3 times max

does anyone have had a similar experience, did I harm my bladder/prostate or is it a muscle nerve problem?

... The pain is so strong that I'll need to drink 3-5 beers in order to make it disappear and it usually lasts for about an hour or maybe 2. I've noticed that this pain is also more likely to occur if I have an ejaculation soon after drinking alcohol.

Alcohol can be the cause of such problems rather than a therapy ...

Pain experienced by individuals depends on the severity of the polyneuropathy. It may be dull and constant in some individuals while being sharp and lancinating [aka stabbing] in others .... Certain people may also feel cramping sensations in the muscles affected and others say there is a burning sensation

http://en.wikipedia.org/wiki/Alcoholic_polyneuropathy

Vasculitis can also cause neuropathy : vasculitic neuropathy

[sadandfrustrated]

Hello everyone:

I have been a silent observer of this forum for the past 4 or 5 years.

I am 18 to 22 years old and have greatly suffered from all the symptoms that you do as well.

Right now, I'm in a very dark place. So, I've decided to finally join the forum and ask for your help.

I noticed that Glodulev? and Nathan had both found solutions that have worked so far.

Would it be possible to ask for a hard guideline on how I would go about curing myself like they did?

I have tried Niacin, Benadryll and the other treatments to no avail.

Please help. I feel like my life is a waste and that there is no future for me. I just want to escape from his living hell. Sometimes, I feel like there's no point in living on.....  :-'( :-'(

[Prancer]

Hello everyone:

I have been a silent observer of this forum for the past 4 or 5 years.

I am 18 to 22 years old and have greatly suffered from all the symptoms that you do as well.

Right now, I'm in a very dark place. So, I've decided to finally join the forum and ask for your help.

I noticed that Glodulev? and Nathan had both found solutions that have worked so far.

Would it be possible to ask for a hard guideline on how I would go about curing myself like they did?

I have tried Niacin, Benadryll and the other treatments to no avail.

Please help. I feel like my life is a waste and that there is no future for me. I just want to escape from his living hell. Sometimes, I feel like there's no point in living on.....  :-'( :-'(

welcome sadandfrustrated,

you've been a silent reader for a long time - way, way longer than i have.
it's great that you're posting. so about herman and nathan's solutions, i'll leave those q's for someone like b_daniel who likely has more knowledge about those two solutions than i do. but again, welcome and hopefully you'll find something that works well for you.

[johanstefansson]

I just got my tests back from the doctor. Was a blood test and result is I dont have IgE antibodies against sperm and doctor concluding can not be allergy.

What a disappointment, in a way.

[Jonas STHLM]

I just got my tests back from the doctor. Was a blood test and result is I dont have IgE antibodies against sperm and doctor concluding can not be allergy.

What a disappointment, in a way.

Where did you get tested?

[sadandfrustrated]

Hi Prancer,

Thank you for the words of welcome.

I have been avoiding talking to doctors about this problem after constantly getting the cold shoulder. Should I keep looking for a helpful physician?

[Prancer]

it's totally up to you. in my case, since first getting pois nearly a decade ago in august when i was 14 i've always known that any doctor i saw would have no idea what my problem was. still, in the early days of having pois i did go to about 3 or 4 doctors and just like i thought, they found nothing wrong. it's not necessarily their fault though (if i were them i probably wouldn't know what it was either because it's so new).

however, if you do lots research and find a really good one that's very open minded, then you have good chance. even show him/her this forum. there are lots of open-minded doctors out there willing to look at every possible cause, but sadly most of them just go by what they already understand. even so, in the near future we are expecting some good researchers taking at look at pois and trying their best to find a solution.

good luck, hopefully you'll find the perfect doctor!