A new way of thinking and searching

[SWAlexander]

Hello everybody

I was reluctant to report a new and old discovery since many in this forum are low on energy or already overwhelmed with information.
Nevertheless I thought, it is important and maybe another way to think about ME/CFS or find one other virus than EBV.

Since 2015 I had a hint. Explaining the same symptoms to every doctor I came across – none had a clue – even when I mentioned a possible long-forgotten virus.
Yesterday, a doctor asked me questions no other doctor asked before. Shortly after - bam he hit the target, confirming what I sensed for many years - it is PPS (Post-polio Syndrome).

Since there is still no indefinite biomarker for MR/CFS maybe this could be another hint. These links are meant to encourage everyone to look deeper - only if there is enough energy available. Please do not feel obligated to read.

Post-polio Syndrome: More Than Just a Lower Motor Neuron Disease: https://www.frontiersin.org/articles/10.3389/fneur.2019.00773/full

Long-haul COVID-19 similar to post-polio syndrome https://connect.uclahealth.org/2021/01/25/long-haul-covid-19-similar-to-post-polio-syndrome/

PPMA: Post-Polio Progressive Muscular Atrophy
https://rarediseases.org/rare-diseases/post-polio-syndrome/

 

[SWAlexander]

PPS (Post-polio Syndrome) leaves muscle weakness in many areas.
In my case, besides weakness in the legs and thorax, there is a "winged scapula/long thoracic nerve issue" that affects also breathing and is possibly related to PPS.
I am in the process of arranging an appointment with a specialist in the UK since there are no appointments available in Germany.

MRI 2021 "Findings in the sagittal section are advanced osteochondrosis and spondodroses, no thoracic prolapse, no spiral narrowing, no thoracic myelopathy. in the area of the tip of the scapula, there are two-dimensional contrast medium raffinates of the soft tissue structure towards the thoracic wall. The processes run out on the thoracic wall."

 

[andyguitar]

I am in the process of arranging an appointment with a specialist in the UK since there are no appointments available in Germany.

Well good luck with that @SWAlexander polio has been in the news a bit here in England as some of the virus has been detected in er... sewage samples. Thought to be from someone who had been vaccinated using the live virus but who knows?

 

[SWAlexander]

polio has been in the news a bit here in England

I know, BBC reported. Thank you.
Did you read about the young nurse, 30, in the UK died from TB?

 

[Husband of]

@SWAlexander does this mean you were once diagnosed with polio?

 

[SWAlexander]

@SWAlexander does this mean you were once diagnosed with polio?

I collapsed during a treadmill test in 2015 at the Heart Hospital Albuquerque.
A young doctor suggested then, that I have PPS but was overruled by his senior. The medical report, signed by the senior, never mentioned PPS.
Mentioning PPS later to many other doctors (UNMH neurology included) as a possibility for muscle weakness or if there is a genetic component since my brother, 1 year my junior, died in 2014 because of ALS, ended up in "that's nonsense" or some other dismissive reactions.
More clues appear every day (MRI) but I cannot find a PPS specialist in Germany (YET).

 

[SWAlexander]

Tomorrow I have a very important ZOOM appointment with a doctor in the UK about PPS (post-polio symptoms).
I´ll report the results.

Is research ready to address multi possibilities, besides Herpes, and EBV?

I keep asking the same question, what virus causes ME/CFS? Is it Herpes, EBV or there are still unnoticed ones like polio, which had a mild course in childhood and are now showing up as ME/CFS.
Or was it some kind of medication?

• Myositis is a rare disease that involves inflammation of the muscles https://www-usz-ch.translate.goog/k..._sl=de&_x_tr_tl=en&_x_tr_hl=en&_x_tr_pto=wapp
• Post-polio Syndrome: More Than Just a Lower Motor Neuron Disease: https://www.frontiersin.org/articles/10.3389/fneur.2019.00773/full

Your comments are welcome.

 

[Booble]

That seems a little odd to have had Polio and not know it.

My uncle (about to turn age 90) had Polio and for the last 7 or 8 years has dealt with Post-Polio syndrome but boy that seems a long shot for those who never knew of having polio. $0.02

 

[SWAlexander]

that seems a long shot for those who never knew of having polio

Yes, it is a long shot. I have had this muscle weakness since I was in Kindergarten after I was sick for almost 4 weeks. They thought it was a bad flu. Nobody really cared but blamed the child, calling it "just too lazy to walk".

 

[Booble]

Yes, it is a long shot. I have had this muscle weakness since I was in Kindergarten after I was sick for almost 4 weeks. They thought it was a bad flu. Nobody really cared but blamed the child, calling it "just too lazy to walk".

Hunh, interesting. May I ask what year and geographic location that was?

 

[SWAlexander]

geographic location

It was Germany / Bavaria. I´m born in 1949. There was no polio vaccine until 1960.

 

[Booble]

It was Germany / Bavaria. I´m born in 1949. There was no polio vaccine until 1960.

Very interesting. I wish you good luck.
My uncle was 1932 in the US (Boston).
In the good news category, he's celebrating his 90th birthday the end of this month. He's had a good life.

 

[hapl808]

I've wondered about PPS occasionally, but the overall symptoms and onset don't seem 'right' to me, but obviously that's only going by what doctors think happens which we know is often wrong in many disorders.

I can no longer really stand without crutches and have pretty bad muscle weakness, but at least at the moment it seems to not be getting worse (or better). Been at its current level for maybe 2+ years. Before that had 3 years where it was worse, then another 3 years where it was declining. They considered ALS and myositis and such for awhile, but eventually just gave me the shrug. I eventually stopped seeing my neuromuscular specialist when she wanted to do some exploratory biopsies, but also couldn't tell me a single finding that could give her a diagnosable disease based on that biospy.

 

[SWAlexander]

but eventually just gave me the shrug

This is what I experienced as well.
One year after my brother died of ALS I went to a neurologist. He laugh and said yes, your left side is weaker but it not ALS. That was all.

 

[SWAlexander]

July 18th - It is official:

Diagnoses:
1. Polio
2. Post-polio syndrome
3. Psoriasis 1961
4. Psoriatic arthropathy
5. Migraines since 10 years of age
6. Arnold Chiari malformation type 2, decompression 2009
7. Widespread OA neck, spine, upper limbs
8. Spondylolisthesis
9. Hemi-laminectomies with posterolateral fusion with pedicle screws April 2011
10. Decompression of fusion of L4/5 2016 complicated by infection and sepsis
11. Hysterectomy 1979
12. Kyphoscoliosis
13. Tarlov cyst in spine found in the spinal vertebrae 2013
14. Large scapular ganglion cyst
15. Antiphospholipid syndrome
16. Von Willebrand factor
17. Thrombosis (DVTs six to seven times upper and lower limbs)
18. COVID 2021 complicated by POTS syndrome
19. Post COVID rash - florid widespread petechial rash
20. Mast cell activation syndrome
21. Cortical insufficiency 2021

The sad part is not the diagnosis, it is that I never know how life feels without pain or how to be well and normal.

 

[Booble]

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.

 

[Rufous McKinney]

Always uncomfortable.

well said.........

 

[SWAlexander]

good at hiding it so others never know about pain and suffering endured.

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.

 

[Booble]

[QUOTE="SWAlexander, post: 2406452, member: 43477"
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).[/QUOTE]

Which is why so many of us hide it.
People don't understand.
Hidden illnesses.
There is much more attention to the "hidden illness of mental illness" than the hidden illness of physical illness.

I remember at one point I was thinking it would be good if I got pregnant because then I'd have an excuse for feeling like shit. Imagine that? More interested in having an excuse for feeling like shit than having the actual baby.

Side note: Of course, I ended up not being able to get pregnant because my fallopian tubes were destroyed from endometriosis....

Anyway, I digress.... you take care of yourself.
Hope you can find a few moments here and there of peace and smiles.

 

[SWAlexander]

Hope you can find a few moments here and there of peace and smiles.

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