Best theory so far?

[Bowser]

May I ask what led you to this explanation? Was it the symptoms you have, and if yes, which symptoms? Is there any evidence other than the empty sella that points in this direction?

Just asking because I suspect this could also play a role in my situation but I've never actually explored this avenue.

Hi. Sorry, I'm seeing this post only now. I think I didn't get a notification.

There are a couple of lines of evidence that led me to the conclusion of thoracic outlet syndrome:

1. Empty sella
2. Marginal Improvement of symptoms with Diamox
3. Dramatic worsening of symptoms after strength exercise for the scalene muscle (video here:

)
4. Improvement of symptoms if I do the above exercise carefully and gradually over an extended period of time

If you want to test yourself for TOS, you should do the above exercise and see if your symptoms get worse.

I am confident now that the way to cure my TOS is to gradually and slowly strengthen my inhibited scalene muscles over a long period of time.

Right now I am able to do one repetition per day, which is a great improvement over earlier this year when I was only able to do one repetition twice per week. Beyond that, my symptoms would exacerbate greatly.

Pretty soon I should be able to do two repetitions per day, and keep gradually increasing the number of repetitions over many months.

 

[Bergkamp]

Hi. Sorry, I'm seeing this post only now. I think I didn't get a notification.

There are a couple of lines of evidence that led me to the conclusion of thoracic outlet syndrome:

1. Empty sella
2. Marginal Improvement of symptoms with Diamox
3. Dramatic worsening of symptoms after strength exercise for the scalene muscle (video here:

)
4. Improvement of symptoms if I do the above exercise carefully and gradually over an extended period of time

If you want to test yourself for TOS, you should do the above exercise and see if your symptoms get worse.

I am confident now that the way to cure my TOS is to gradually and slowly strengthen my inhibited scalene muscles over a long period of time.

Right now I am able to do one repetition per day, which is a great improvement over earlier this year when I was only able to do one repetition twice per week. Beyond that, my symptoms would exacerbate greatly.

Pretty soon I should be able to do two repetitions per day, and keep gradually increasing the number of repetitions over many months.

I’m going to try this out. Thanks for the explanation!

 

[lenora]

I think it's what we feel levelled us in the first instance. With some people, it was only one virus....with others a combination of things. There is no one easy answer to your question.

I believe that mine is both viral (many) and mechanical. Also, we can have many different illnesses on top of ME. This really does complicate matters. Yours, Lenora.

 

[Bowser]

Tried to get IH evaluated at the eye doctor. That failed, I was dismissed without any testing or discussion even.

Was reading this thread and I thought I might address this.

I too was dismissed by an eye doctor after an examination and ruling out of papilledema. But this is actually an expected result because papilledema is only likely to appear in a severe acute case of IIH in hospital settings, where the diagnostic indicators will be abundantly clear.

But with CFS/ME, we are dealing with a chronic (not acute) case of IIH, and papilledema is extremely unlikely to appear in chronic IIH.

Here is a good article on this:

https://mskneurology.com/intracranial-hypertension-beyond-csf-diagnosis-and-treatment/

 

[Bowser]

That's interesting. I have a very similar representation. Especially the eyes - my eyes fluctuate between severe dryness and excessive tear production as well. Going to explore the IIH, intracranial pressure, CCI avenues in the coming months I think

I too have dry eyes and photosensitivity and computer eye strain issues.

And what I would describe as facial pain, concentrated around my sinuses (cheekbones and eyebrows).

If you have these symptoms, definitely try a self-diagnosis of TOS as I explained a few posts above this. I am curious and greatly invested to see other people's responses to the scalene exercise.

 

[lenora]

Unfortunately many neurological illness display the exact same symptoms...at some time. It's definite (at least according to me, who has had 2 neurological surgeries) that this is not always or even close to the answer.

Yes, I had surgeries, but they may last for a short time and then one is back where one started. Sinus whether the hindbrain or facial is a problem. The answer: I don't know, although I've found relief in acupressure. Yes, I can take meds but they seem to affect me in odd ways...OTC ones, I'm talking about.

My neurologist has even suspected migraines b/c of the location. I have serum and needle here for self-application, but thus far I've avoided it. Certain times of the day are worse, which then leads me to believe eyestrain. All in all, I'm not so sure there is a definitive answer, at least at this time, and I certainly wouldn't have surgery for what really began after a stent was inserted (other side of face) for a carotid artery problem. It seems that all we do is exchange one problem for another.

But bear in mind that I'm older and one learns to live with such things. I'm not saying you should....each person has to make his/her own determination. Best of luck. Yours, Lenora.

 

[Marylib]

For my ME/CFS: Untreated hypothyroidism and hardship/overexertion caused metabolic damage to the CNS. Exertion causes easy fatigue of functions such as movement, cognitive functions, as well as autonomic functions. Pushing past the fatigue releases endorphins, which cause PEM and brain fog.

Naloxone cures the PEM and brain fog by antagonizing endorphins, but not the fatigue or possible damage. The damage caused by hypothyroidism could be due to localized lactic acidosis. Anion gap was high for many years, and would be much higher in the brain, considering it's a metabolically active organ.

Treatment is ramping up thyroid, supplementing thiamine, and increasing cerebral blood flow, all of which reduce lactic acid formation in the CNS and give the brain an oppurtunity to heal.

I never heard that naloxone cures the PEM or cognitive disfunction. Did it work for you? Hope so.

 

[Irat]

For me ME,MCS,Fibro, Gulf war syndrome etc is
a condition where either repeated neurological exposure to a sub-threshold stimulus (i.e. one that does not produce problems), or a short-term high intensity stimulus (e.g. brain trauma), eventually leads to a persistent hypersensitivity to that stimulus.this can be a virus,mold,trauma,lyme ,physical injury and other oxidative stress in your life etc,

This can lead to a kindling effect in the brain and causes chronic symphatetic arousal.and physiological abnormalities downwards.metabolic imbalances and a build up of toxins.

Treatments are multifactorial and individual.and like learner 1 said no magic pill.

no one will come and save you no one is fixing this for you. You have got to engineer your own healing,

 

[roller]

cdv canine distemper virus
in cahoots with mtb tbc tuberculosis



(but these ppl should have a strong reaction to corona covid and/or its vaccination)

 

[Boba]

cdv canine distemper virus
in cahoots with mtb tbc tuberculosis



(but these ppl should have a strong reaction to corona covid and/or its vaccination)

Hmm, interesting. Do you think that‘s the case for you? How would one test for that?

 

[Mouse girl]

genetics and varies pathogens as catalyst

voila! easy peasy

nothing new

 

[Violeta]

Hi. Sorry, I'm seeing this post only now. I think I didn't get a notification.

There are a couple of lines of evidence that led me to the conclusion of thoracic outlet syndrome:

1. Empty sella
2. Marginal Improvement of symptoms with Diamox
3. Dramatic worsening of symptoms after strength exercise for the scalene muscle (video here:

)
4. Improvement of symptoms if I do the above exercise carefully and gradually over an extended period of time

If you want to test yourself for TOS, you should do the above exercise and see if your symptoms get worse.

I am confident now that the way to cure my TOS is to gradually and slowly strengthen my inhibited scalene muscles over a long period of time.

Right now I am able to do one repetition per day, which is a great improvement over earlier this year when I was only able to do one repetition twice per week. Beyond that, my symptoms would exacerbate greatly.

Pretty soon I should be able to do two repetitions per day, and keep gradually increasing the number of repetitions over many months.

Why does Diamox help? Oh, hypoxia.

And I watched that video, yikes, I am imagining how doing that exercise feels. I started experiencing pain in an area next to my clavical, right side, last night, and if it is one of those muscles, do you think I should wait to try that exercise?

I have been fighting poor posture since teen years; head jutting forward, very difficult to correct. Someone posted a video in a different thread with exercises that deal with that. I have been trying to work on that, amazing how difficult it is for me. I have very weak skeletal muscles.

 

[SWAlexander]

Much is listed. I only would add inflammation of the hypothalamic-pituitary-system and hormone imbalance.

 

[lenora]

Wow....a very good thread. I haven't read all of it (there's a lot) but I would like to add that researchers are working together, albeit more in some countries than others. Australia and Germany as well as the UK I would like to mention.

Yes, it would be most helpful if Long Covid research could help answer some of the really big questions we have. In the meantime we're all doing the very best WE can. Hoping for answers soon. Yours, Lenora.