My POIS symptoms

[Kit]

Hello again. I have POIS with chronic muscle pain, uncomfort in the chest when I swallow food, difficulty tolerating intense exercise, and heat intolerance. All these problems involve palpitations that I can hear.  I’ve passed every blood test my doctor has thrown at me except for the vitamin d 25-hydroxy test. I’ve only gotten referrals for physical therapy and pain management. I requested a referral to see neurology, but my doctor and clinic denied it. It’s been quite difficult to put my focus on each problem individually while focusing on the rest of my life. Does any one know what could be wrong with me chronically aside from POIS?

[Muon]

Abnormal mast cell responses? That's just one of the many theories.

[Journey]

Test VitD

[mardi]

Hey Kit, I have symptoms similar to yours.
Have you ever thought about trying an emg exam? Vitamin D deficiency could mean, as in my case, the possibility of spasmophilia. Try it, even privately: in Europe it costs a maximum of € 150-200. moreover there could also be endocrinological problems (I am also following this path).

In your case, are the symptoms chronic or they appear only after orgasms and then disappear?

[Journey]

Hey Kit, I have symptoms similar to yours.
Have you ever thought about trying an emg exam? Vitamin D deficiency could mean, as in my case, the possibility of spasmophilia. Try it, even privately: in Europe it costs a maximum of € 150-200. moreover there could also be endocrinological problems (I am also following this path).

In your case, are the symptoms chronic or they appear only after orgasms and then disappear?

Spasmophilia deplete VitD? I had sleeptime contraction seizures when young that antiepileptics cured, don't take anything anymore.

[Kit]

Abnormal mast cell responses? That's just one of the many theories.

Wow, I’m not getting any ideas but who can diagnose something like that. I am currently seeing one doctor from the “POIS doctors” list you have here but not for the other symptoms I mentioned.

[Kit]

Test VitD

I’m currently taking Vit D 50,000 units every week with vitamin K2.

[Kit]

Hey Kit, I have symptoms similar to yours.
Have you ever thought about trying an emg exam? Vitamin D deficiency could mean, as in my case, the possibility of spasmophilia. Try it, even privately: in Europe it costs a maximum of € 150-200. moreover there could also be endocrinological problems (I am also following this path).

In your case, are the symptoms chronic or they appear only after orgasms and then disappear?

The symptoms I listed above are chronic. Although, I still experience POIS brain fog, muscle tension, anxiety, and depression but those symptoms subside after a few days.

[Kit]

Thanks for the responses everyone!

[Muon]

Abnormal mast cell responses? That's just one of the many theories.

Wow, I’m not getting any ideas but who can diagnose something like that. I am currently seeing one doctor from the “POIS doctors” list you have here but not for the other symptoms I mentioned.

Most countries don't have the proper toolset to investigate this. Patients got chronic non-specific multisystem symptoms inflammatory in nature and often provoked by triggers. You will need big picture analyses. Here is are some threads about it:

https://poiscenter.com/forums/index.php?topic=3236.0

https://poiscenter.com/forums/index.php?topic=3396.0

Different receptors on mast cells can be targeted by trial and error because it can behave via tons of different pathways from person to person. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3318920/table/T1/

Many of the things which were a success to POISers in literature and on this forum can actually interact with mast cells. And it's possible one will need to target multiple receptors and end up with a personal 'stack'.

[berlin1984]

Hello again. I have POIS with chronic muscle pain, uncomfort in the chest when I swallow food, difficulty tolerating intense exercise, and heat intolerance. All these problems involve palpitations that I can hear.  I’ve passed every blood test my doctor has thrown at me except for the vitamin d 25-hydroxy test. I’ve only gotten referrals for physical therapy and pain management. I requested a referral to see neurology, but my doctor and clinic denied it. It’s been quite difficult to put my focus on each problem individually while focusing on the rest of my life. Does any one know what could be wrong with me chronically aside from POIS?

I think I have similar symptoms to you. Standard blood tests are also OK for me except vitamin d.
I was at neurologists some years ago and they didn't find anything.

My recommendations:
* Go to a dentist to check for gum disease. This is where I have problems.
* Maybe try my protocol (see my signature) with adaptogens? Prescription free.. (Disclaimer: Investigate first, don't just buy and take!)
* Maybe try low dose vitamin d sublingual instead of pills to swallow?
* Try to cut out the chronic consumption of things that mess with hormones/neurotransmitters (alcohol, coffee, ...)
* Maybe try to get Milnacipran as it's supposed to help for Fibromyalgia too. (Do you have low drive / motivation too?) (I haven't tried this approach yet, but it will be next on my list)

[Kit]

Hello again. I have POIS with chronic muscle pain, uncomfort in the chest when I swallow food, difficulty tolerating intense exercise, and heat intolerance. All these problems involve palpitations that I can hear.  I’ve passed every blood test my doctor has thrown at me except for the vitamin d 25-hydroxy test. I’ve only gotten referrals for physical therapy and pain management. I requested a referral to see neurology, but my doctor and clinic denied it. It’s been quite difficult to put my focus on each problem individually while focusing on the rest of my life. Does any one know what could be wrong with me chronically aside from POIS?

I think I have similar symptoms to you. Standard blood tests are also OK for me except vitamin d.
I was at neurologists some years ago and they didn't find anything.

My recommendations:
* Go to a dentist to check for gum disease. This is where I have problems.
* Maybe try my protocol (see my signature) with adaptogens? Prescription free.. (Disclaimer: Investigate first, don't just buy and take!)
* Maybe try low dose vitamin d sublingual instead of pills to swallow?
* Try to cut out the chronic consumption of things that mess with hormones/neurotransmitters (alcohol, coffee, ...)
* Maybe try to get Milnacipran as it's supposed to help for Fibromyalgia too. (Do you have low drive / motivation too?) (I haven't tried this approach yet, but it will be next on my list)

Hello Berlin, thanks for the recommendations! I will be seeing a dentist soon so that’s on my list. The only drinks I have are water, unsweet silk milk and fruit smoothies with no added sugars. Yes I have low motivation/drive quite often! Do you suspect you have fibromyalgia?

[Kit]

Hey Kit, I have symptoms similar to yours.
Have you ever thought about trying an emg exam? Vitamin D deficiency could mean, as in my case, the possibility of spasmophilia. Try it, even privately: in Europe it costs a maximum of € 150-200. moreover there could also be endocrinological problems (I am also following this path).

In your case, are the symptoms chronic or they appear only after orgasms and then disappear?

Hi again Mardi. Are you diagnosed with spasmophilia? If so, how are you managing it?

[mardi]

 I have POIS for about 15 years. 4 years ago the symptoms worsened strongly, so I decided to investigate further, and after consulting several doctors and after having done several tests, I took the EMG test, three times. All three times the result was positive. Diagnosis: latent normocalcemic tetany (aka normocalcemic spasmophilia). Symptoms: fasciculations, exhaustion, brain fog, dry skin, stomach upset, red eyes, chvostek sign. The same symptoms I have after orgasm.

Now, I don't think POIS is 100% reducible to spasmophilia: surely there is something more that causes us these horrible symptoms. However, I am convinced that there is a strong link with spasmophilia, and in particular with a neurological system disorder due to poor absorption of minerals by cells.

I would like to know how many poisers are EMG positive, but it looks like no one here has ever done it, except me.
It seems to me that too many people here focus on treating symptoms through unnecessary vitamin concoctions, and not on finding the causes (no offense to anyone) 

[Journey]

I have POIS for about 15 years. 4 years ago the symptoms worsened strongly, so I decided to investigate further, and after consulting several doctors and after having done several tests, I took the EMG test, three times. All three times the result was positive. Diagnosis: latent normocalcemic tetany (aka normocalcemic spasmophilia). Symptoms: fasciculations, exhaustion, brain fog, dry skin, stomach upset, red eyes, chvostek sign. The same symptoms I have after orgasm.

Now, I don't think POIS is 100% reducible to spasmophilia: surely there is something more that causes us these horrible symptoms. However, I am convinced that there is a strong link with spasmophilia, and in particular with a neurological system disorder due to poor absorption of minerals by cells.

I would like to know how many poisers are EMG positive, but it looks like no one here has ever done it, except me.
It seems to me that too many people here focus on treating symptoms through unnecessary vitamin concoctions, and not on finding the causes (no offense to anyone) 

How 2 fix spasmophilia? Mast cells might cause it

[mardi]

How 2 fix spasmophilia? Mast cells might cause it
[/quote]

Unfortunately, there is no cure for normocalcemic latent spasmophilia. it is recommended to take vitamin D and magnesium, and avoid those substances that can prevent cellular absorption (caffeine, sugar ...).
Also in this case, it would be necessary to analyze the causes of spasmophilia (kidney problems? Thyroid? Allergies?) rather than focus on treating the symptoms.

[Muon]

However, I am convinced that there is a strong link with spasmophilia, and in particular with a neurological system disorder due to poor absorption of minerals by cells.

So why don't they investigate mineral absorption?

[Journey]

How 2 fix spasmophilia? Mast cells might cause it

Unfortunately, there is no cure for normocalcemic latent spasmophilia. it is recommended to take vitamin D and magnesium, and avoid those substances that can prevent cellular absorption (caffeine, sugar ...).
Also in this case, it would be necessary to analyze the causes of spasmophilia (kidney problems? Thyroid? Allergies?) rather than focus on treating the symptoms.
[/quote]
My TSH when measured is 2.2-2.4

[mardi]

However, I am convinced that there is a strong link with spasmophilia, and in particular with a neurological system disorder due to poor absorption of minerals by cells.

So why don't they investigate mineral absorption?

Well, medical research focuses on more common diseases. Unfortunately, spasmophilia is not a widespread disease.

[Kit]

I have POIS for about 15 years. 4 years ago the symptoms worsened strongly, so I decided to investigate further, and after consulting several doctors and after having done several tests, I took the EMG test, three times. All three times the result was positive. Diagnosis: latent normocalcemic tetany (aka normocalcemic spasmophilia). Symptoms: fasciculations, exhaustion, brain fog, dry skin, stomach upset, red eyes, chvostek sign. The same symptoms I have after orgasm.

Hi again Mardi! I'm sorry to hear that you have been dealing with POIS for 15 years. I have fasciculations (not often), muscle pain/weakness/spasms, exhaustion, brain fog, and anxiety that would suggest I have something like spasmophilia. My calcium, magnesium, and TSH levels are good; I have tested for each one at least two times. It would be interesting for me to hear how Vit. D deficiency was possibly connected to some of ours symptoms or even something like mineral absorption.