A new way of thinking and searching

[Booble]

"my fallopian tubes were destroyed from endometriosis.... " I´m so very sorry.

Thanks. It's OK. It all worked out for the best.

 

[tyson oberle]

Thank you for your kind words. Yes, I had to learn to hide it since early childhood, since everybody, incl. doctors told me there is nothing wrong with me and I just sought attention or I´m too lazy.

Yes, my doctor in the UK went for 2 1/4 hours through every detail. Back in the states, it was a young doctor in NM who suggested PPS but was overruled by his superior.
Far more hurting were the over 50 years among so-called friends, their ignorance, unsolicited advice and mockery (you are young and act like a feeble old woman, or are you getting old, etc). The biggest part in my life, besides the weakness, was when others were wearing tank tops and shorts I was wearing long pants and a cardigan because I was always cold.

Why do you think you were always cold? Do you think it was occuring from one of the 21 diagnosises you mentioned? or could it be low thyroid? or Anemia? or possibly from inefficient mitochondria not generating enough body heat? or bad circulation? or microclots?

 

[Booble]

Why do you think you were always cold? Do you think it was occuring from one of the 21 diagnosises you mentioned? or could it be low thyroid? or Anemia? or possibly from inefficient mitochondria not generating enough body heat? or bad circulation? or microclots?

Keep in mind that being cold all the time can also be from:
- being skinny, not having a lot of extra body fat padding
- being used to warmer weather
- not being active

 

[SWAlexander]

To tyson oberle. Your question is the puzzle of my life.
According to blood tests, my TSH is normal, and no Anemia. Unfortunately, I have no way to have a test for microclots. Polio is a muscle and nerve contacter problem that would explain bad circulation. Or it is VWF-Leiden.
I´ve been cold since early childhood (low temperature, average 36C), so I would guess that mitochondria are not working properly. Cortical insufficiency (first time diagnosed 1979) would be another indicator.

 

[Booble]

To tyson oberle. Your question is the puzzle of my life.
According to blood tests, my TSH is normal, and no Anemia. Unfortunately, I have no way to have a test for microclots. Polio is a muscle and nerve contacter problem that would explain bad circulation.
I´ve been cold since early childhood (low temperature, average 36C), so I would guess that mitochondria are not working properly.

I stopped trying to figure out.
Husband doesn't have any medical conditions and he's always freezing. It was 76 degrees in the house the other morning and he was bundling up.

 

[Treeman]

I feel cold a lot of the time. When I start to move about I warm up. So it's during resting that the inactivity makes me cold.

 

[SWAlexander]

76 degrees in the house the other morning and he was bundling up.

Sounds like me. 77 F in the house and I wear socks and a cardigan.

 

[SWAlexander]

Husband doesn't have any medical conditions and he's always freezing.

My friend's husband was also always cold and tired. Last year he (finally) was tested for VWF (von Willebrand factor) platelet adhesion to the damaged vascular system.

 

[Booble]

My friend's husband was also always cold and tired. Last year he (finally) was tested for VWF (von Willebrand factor) platelet adhesion to the damaged vascular system.

My husband's just skinny.
Sorry about your friend's husband.

 

[SWAlexander]

Earlier in this post I mentioned winged scapula or snapping scapula, now a year later I have a diagnosis.

Waiting for a 2nd opinion but the neurologist is pretty sure.

In short (rough translation):
According to an earlier MRI and now physical exam, I´m certain that the Palsy of the long thoracic nerve winged scapula is the paralysis of the serratus anterior muscle resulting from damage to the long thoracic nerve.

For the patient with Covid-19 history and viral upper respiratory tract infection followed by shoulder pain and scapular winging, the most probable Dx would be both sides Parsonage-Turner Syndrome (PTS), also known as Neuralgic Amyotrophy or Brachial Plexus Neuritis.

Pronounced inflammatory response leads to neuronal damage causing neuropathic pain and muscle weakness often manifesting as scapular winging.

I

 

[Rufous McKinney]

Pronounced inflammatory response leads to neuronal damage causing neuropathic pain and muscle weakness often manifesting as scapular winging.

that looks very uncomfortable....is it like that all the time?

 

[SWAlexander]

is it like that all the time

It´s permanent.
It´s more than uncomfortable, it is also the damn muscle weakness.
Sometimes, after using my arms too much, carrying groceries, or cleaning, I cannot even lift a cup of coffee.
I have been unable to type for years now unless I'm bracing my elbows.
I suspect it is the damaged long thoracic nerve (T11 & 12), as shown in an MRI from 2014.

 

[SWAlexander]

Hi SWA --- So sorry. My understanding is that there is no way to test for post-polio syndrome and it's based on ruling out other factors. Were your doctors able to do some kind of confirmation?

It is sad that we are "different" from the norm. Always uncomfortable. The only words of wisdom I can share is that the more you learn about people, the more you realize that nearly everyone has parts of their lives where they feel and wish they were well and normal and not in discomfort. Sometimes physical, sometimes mental, sometimes circumstances. In reality, we're all just stumbling along this life. It's just that most people (a lot of us included) are good at hiding it so others never know about pain and suffering endured.

Hi Booble,

Thank you for your message. Sorry for my late response. You are absolutely right—until recently, there hasn’t been a reliable diagnostic tool for Post-Polio Syndrome (PPS). Since receiving my PPS diagnosis in 2022, I’ve dedicated myself to researching this condition and consulting professionals across various fields. Many of these experts agree that PPS is related to the demyelination of the myelin sheath—the degradation of this critical structure composed of cholesterol and enriched in glycolipids.

More recently, an electromyography (EMG) test provided further insights, revealing a progression in my condition. The results showed worsening nerve impulse transmission, with some signals slowing significantly or even failing to trigger nerve contractions. EMG testing for denervated muscles typically reveals the Reduced or absent electrical activity and Abnormal spontaneous activity, such as fibrillations or positive sharp waves.
Denervated muscles lose their connection to the nervous system due to nerve damage or dysfunction. This disconnection prevents the muscles from receiving the signals needed for contraction, leading to physiological changes, including atrophy and loss of function.

I chose to forego a muscle biopsy to avoid additional pain and fatigue. While a biopsy might reveal signs of atrophy, fibrosis, or fatty infiltration in cases of long-standing denervation, I already have clear evidence of atrophy linked to elevated phytanic acids (very-long-chain fatty acids, VLCFA).

Interestingly, a German neurologist directed me to an in-depth presentation on PPS titled "Poliomyelitis: Die Spätfolgen und das Post-Polio-Syndrom (PPS)" (

). This video confirmed my diagnosis, which was initially made by my specialist in the UK.

The more I research PPS, the more questions arise—particularly regarding why conditions such as ME/CFS are not commonly investigated with tools like electromyography (EMG) or spinal taps. It seems there’s a significant gap in diagnostic approaches for these conditions, which could benefit from more thorough neurological testing.