I think have ALS

General Discussion
#22

I asked you a different thing.

Not gonna focus on this, it scares the shit out of me to even think about it.

The only thing that @Papasmurf mentioned that could possibly fit the ALS diagnosis (as well as 10,000 other diagnosis) is the difficulty to swallow, which doesn’t usually have such a rapid worsening in this condition.

Ryan can pay a visit to a neurologist if he’s interested in ruling this out, but quite frankly to seat here and scare the fuck out of ourself isn’t worth it.

Not for me at least.

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#23

Ohh ok thanks for explaining that …

@holyhead @TFD @Exsexgod

So I watched the you tube video . Great video . Would be interested in learning more about who these two female doctors are (mother and daughter) and where they get their information from. I’m not going to go back and write down what time of the video they made certain statements during because I’m busy and it will take too much time. But I’ll list a couple

Some times in ALS we see a complete block of the androgen receptors. How did they establish that the androgen receptors were completely blocked in these ALS patients that she’s talking about ? Is she guessing ? I mean is she saying there is a test to test for this? Because if there is we should know about it and be testing our androgens receptors…

She’s saying that fin blocks androgen receptors permanently which is why PFS patients need high dose testosterone TRT to respond to androgens. Where did she get this information from ? Is she guessing that this is why some PFS patients can take high dose TRT and feel better ? Because their androgen receptors are partially blocked so they need more testosterone ? I have never seen this established in a study and I have had PFS for ten years. So how could she know this unless she has info we don’t have. Also from our experience only a very few amount of PFS patients can jack their T up to the upper range and see benefits in the PFS symptoms that matter. She’s speaking in terms of hey more T means better response for PFS victims. Where is she getting this info from ? I’m not saying she’s wrong. I’m just saying as forum members on this site we are held up to high enough standards to prove our statements. They are doctors. They should be held to the same standards. Because making these statements as educated guesses is dangerous. But so is not getting the proof out their to us to use if these are claims established by anything beyond educated guesses

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#24

Beside this, how many patients are we talking about?

Because if it comes down to 1 or 2 people, chances are is unrelated.

Is she just trying to scare people to get them to buy whatever she they sell?

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#25

@TFD

No I don’t think that. I think they are trying to help and as doctors in the US even acknowledging PFS is real is something most doctors in the US are not willing to do because they are scared of being attacked for it.

When the older doctor (the mother) makes the comment in the video about ALS and “complete block of androgen receptors” she was speaking in terms of “one ALS patient I had”. Maybe an autopsy was done and brain tissue or something was taken and that’s how it was tested. It would just be nice to know. It would also be nice to know how she’s establishing that androgen receptors are partially blocked permanently in PFS.

From an evidence perspective all we can “see, feel, see, touch and smell” in front of us proving the PFS/ALS connection is the ALS study showing lower DHT in CNS of ALS group and Melchangi’s 2014 study showing lower DHT levels in CNS of PFS group.

Enough for any logical person in our position to say “oh shit” but not enough to sell this connection with like a high degree of certainty. So I wouldn’t be “scared” and even if the connection ends up growing from additional studies there is absolutely nothing we can do about it other then hope for it to be as fast as possible. As horrible as it is most ALS victims go fast …I believe like a year off the top of my head ? Also if you are in a death with dignity state law you need a diagnoses of something that will most likely lead to death in 6 months. So what I heard and read about ALS this will likely qualify. Or at least by the time you lose control and are stuck in your body you should be at the 6 month mark. So the thing with ALS there is no gray area as far as if you have it or not. It’s a guaranteed death sentence. Like fatal insomnia. When I crashed the first time on saw P and stayed up for 6 weeks and was in horrible pain. One doc said that to me. If it’s fatal insomnia which obviously I was thinking it could be then you will guaranteed to be dead in a year tops. In a way that put my mind at ease . Because it was like ok I now have a deff line and point that this can’t get worse then. It’s guaranteed to end at X

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#26

Mitochondrial possibly involved I’ve read androgen receptors over expression affect Mitochondrial dna

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#27

When the older doctor (the mother) makes the comment in the video about ALS and “complete block of androgen receptors” she was speaking in terms of “one ALS patient I had”.

Good to know.

It could also be a coincidence then.

#28

there is no report of ALS on this board thus far.
I myself sometimes i thought i was developing ALS, heck, symptoms are not that different, but i just think that is only PFS similarity

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#29

Nobody was hit by two different syndromes post finasteride syndrome and post aromatise syndrome except Douglas Mitch who is now dead and even he didn’t describe anything like this. If I do any type of exercise whatsoever whether it’s just a a brief walk it incapacitates me for a week, I know that the proteins are damaging the neurons and nerve cells in the brain, I can actually feel it it’s like being punched in the head repeatedly- it gets that painful even if I braze my fingers over the area on the head it is excruciating. I could cope with PFS but God this is a different type of beast which feels like it’s eating me alive from within every single part of my physiology is eroding.

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#30

Mitochondrial dysfunction I think is all downstream mate. Seems like endocrine disrupters can be equivalent to a bomb going off inside you.

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#31

I’m also having great difficulty verbalising my speech.

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#32

Nope
There is one report of a PFS sufferer coming down with Parkinson’s. The guys wife reported it . I believe he was in his 50’s or late 40’s maybe ? Can’t find the thread

One thing to consider though is that there are not that many late forties early 50’s members on here. And I’m guessing that if these PFS sides are some kind of “early onset” ALS or Parkinson’s in my opinion we still wouldn’t actually get ALS or Parkinson’s probably until a while from now. This would just be kinda like awakening the beast type of thing . But the damage to the neurons for it to be full blown ALS or Parkinson’s probable would still take a while

#33

I did but not like this …

I took dut got no sides. Took saw P got all the sexual sides. Then I took armidex after already having PFS and the sexual sides got worse. Then I took saw P again and got smashed

I remember Douglas Mitch.
Sorry to hear what you are going through. What tests are they doing ? Have they took spinal fluid ?

#34

Cognitive abilities are rarely affected in ALS.

#35

Man, out of curiosity, have you udergone testing of any sort?

I mean, what did doctors tell you?

#36

It may be that this is some severe form of ALS because I joined ALS forums and I didn’t hear any of them complaining of symptoms to this degree.

#37

Every test that can be run by the NHS

#38

Man, ALS is pretty bad per sé, I don’t know what you mean by “severe” form but, why would you torture yourself when there are 10,000 other possible diagnosis?

Have you visited a neurologist?

Did you get any diagnosis?

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#39

From the amount of muscle wasting/twitching and weakness I have myself I wouldn’t be surprised if this stuff gave some of us ALS. A tissue biopsy would probably rule this out best, no blood test will show the amount of damage this has done.

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#40

@Papasmurf

So I mentioned this already and by no means am I trying to down play your suffering. I believe and understand everything you are saying and describing

If it’s ALS you will not survive long . Have you read up on prognosis of ALS? My point is that you will not be hanging around for the next 2 years “wondering” if it is ALS. People will ALS can’t breath on their own and suffocate in their sleep usually. This is after completely losing their ability to do anything. Eat, swallow, wipe your ass, walk. You will not be tortured by the idea of it possibly being ALS for long is what I’m trying to say .

When I stayed up for 6 weeks after my second saw P nightmare I literally thought I was dying. My brain was on fire and I was seeing flashes of light that were not their. I was scared to death telling a sleep neurologist that it has to be fatal insomnia a very rear disease. And he said well there is a 90 percent chance it’s not and if it is you won’t be around worrying about this 12 months from now. Or probable even 8 months from now

#41

EDIT.

This thread is getting ridiculous by the way.

@Papasmurf Ryan, go visit a neurologist. There are test I guess to rule this out.

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