Next steps to try slow things down

General Discussion
#1

I’m continuing to find myself in an increasingly tight spot.
I woke last night after two hours to find my leg and arm muscles were locked and frozen again where I couldn’t move After about half an hour they spasmed and returned to a generalised weakened state. I got up and went to the toilet but felt off balance, to note my heart rate is still going too fast and i was disorientated where I didn’t understand my surroundings, I returned to bed. The stabbing pains and spasms then started. I’m also getting severe pain when moving my eyes and have noticed even more muscle weakness than what I’ve been left to deal with. Concentration , focus, cognition and emotional state are getting worse along with all of the other symptoms. . I’ve also noticed that I’ve dropped 5 kg in as many weeks. I can’t afford any more weight loss. I’ve been eating more dopamine rich food to try to cut myself a break but with the receptors being damaged I think this has accelerated things by reducing the dopamine and other neurosteroid baseline levels. Additional
Involuntary muscles have started to show recent decline which I won’t go into on this post.I need to cut dopamine foods in the hope that things slow down with time. The obvious downside is the horrible existence one is left in I.e. being in a constant state of anhedonia, fear, dread, gut wrenching anxiety etc etc

I plan to see the Dr again.and instead of allowing him to say we don’t know how to treat PFS ill present him with my symptoms asking what they’d normally do when shown such a growing list supported by an obviouse abnormal visible decline.
I expect I could be tested for parkinsons dementia (dopamine disease) and Myasthenia gravis which is a rare AI condition… Part of my symptoms fit the bill for both. These have been mentioned on here before.
If they go down the Gravis route there could be the opportunity for an AI therapy which could dampen down the effects of pfs. It’s something some of us are hoping for so we can hold it together while the internal drive for research continues . I’ll keep you posted.
It’s simply wrong in so many ways that we’ve been left to suffer like this with no help from anyone. Its even more frustrating when it’s because of a drug that should never have gotten to market for cosmetic purposes.
For those who are also continuing to decline you may want to look at your dopamine intake. Just a thought!

Thanks
Ry.

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#2

Unfortunate to hear your state is still declining brother. Your fight against this disease has always been an inspiration to me and others here. I’m glad you decided to see the doctor as opposed to suffering alone and isolated. If they have any compassion they will give you the support you deserve. Thanks for keeping us updated. I was able to donate to the PFS Network today and promise to continue doing so.

Godspeed brother

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#3

Dear god… Please dont understand me wrong but when i read your problems i wanna die immediatly. I dont wanna wait the time till my body will falling to pieces. My state is horrible now. But if i still wait and fight Im just torture myself till i will totally insane… I dont wanna wait this total body and mind horror. We have no chance against this. This shit stronger than any human in this earth

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#4

What kind of support??? What are you talking about?? Doctors have no idea what a fuck is this all!!! Everybody thinks someone can help. Are you all blind??? Nobody can help if you have severe case. Better if everybody accept this… As i always say. False hope dosent help

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#5

Is the AI therapy - Aromatose inhibitor?

Sorry to hear about this fella, are you able to get some sleep in at all on nights like this?

I hope they find something where they can help you out .
Keep going , you’re an inspiration to me and so many others here!

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#6

Thanks mate, an autoimmune drug which effectively stops the immune system attacking the messenger neurons in graves disease. I’d hope it would have a wider positive effect on other pfs.symptoms. I regularly only get 2 hours sleep. My sleep has been like this for over 5 years now. Thanks for your kind words.

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#7

I was a meal for mosquitos again yesterday Reluctantly I applied a very small amount of aloevera/tea tree cream (both 5ar inhibitors) to my ankle before bed at 10pm. I went to bed and didn’t wake until 6am (8 hours sleep) I haven’t had normal sleep for years. My awakening was preceded by a normal dream. When I woke I had no physical pain anywhere, my mind felt crystal clear, I felt present, with an inner calm and feeling of resilience. My core felt positive and happy. The only symptom I noticed was the tinnitus. When I got up my frame felt solid and I noticed I didn’t need to piss. My eyesight had returned 20/20. I picked up the Bible and could read it very clearly, the previous day everything was blurred. I also noticed my motivation returned. It felt more real than anything I’ve experienced in the past. As today has progressed things have started to fall away. My gums are killing, I feel weak, anxious etc.etc etc. I’m not recommending anything to anyone as I know 1st hand how dangerous 5ar inhibitors are. It’s shown to me that my over expression must be very acute but it also tells me that when a treatment comes along everything will improve. This isn’t a permanent damaged state. Everyone on here will get their lives back. Just hang on. This shit will be erased just as quickly as it landed.

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#8

Damn you got (temporarily) better with 5ar inhibitors? Crazy man. Did it also help your libido?

But you’re right, this is not a permanent state but I do believe we need to take action for people with long term PFS, waiting won’t cure us.

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#9

It’s very similar to what happens for many but I thought with being that far gone I’d have an immediate worsening only which is what generally happens when I mistakenly get caught out by ingredients in things but I managed to get a bounce… it shows everything remains functional for everyone. I noticed i had weight in my pecker. Same with my muscles etc. I’m confident I could have cracked one off. I expect a treatment would result in an immediate turnaround for everyone. Another point I also felt young again. Previously temporary recoveries felt different, like too much, a rush of hormones but this felt more subtle like the old me. Things are that bad for me but I see it as a sign to carry on no matter what this fucking disease pushes down the mountain.

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#10

Man you’re just like me. I’ve gotten temporary relief from 5aris too. It’s nuts how quickly these temporary recoveries come and go with these 5aris.

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#11

Systemic absorption of tea tree cream applied to your ankle would be negligible if any. Not meaning to party poop but it doesn’t make sense biologically speaking.

#12

Fck yeah brother, this is the positivity we need around here.

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#13

@orthogs you’re quite right but there are many accounts of people being effected by topicals such as shampoos, creams etc etc. This disease does not make sense in many of its characteristics. Some of us are extremely sensitive. I applied one spray of lavender to my pillow 3 years ago and I went through hell that night it was like I’d been poisoned. 5 years ago I didn’t react to anything.

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#14

Doctors think that PFS doesn’t make sense biologically, yet here we are.

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#15

While I do agree with this and from my own experiences something like this wouldn’t affect me.

One should note that for someone with, for example a peanut allergy. Just a tiny, tiny amount of peanuts can make them go into anaphylactic shock (and possible death).

But not every person with a peanut allergy is that sensitive.

So while I’m personally skeptical to these kind of stories, I try to not dismiss them either since with the current information we have on PFS, it could literally be anything.

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#16

I’ve had the reprieve three times from doing absolutely nothing. Felt clear, contacted people, thought about the future and hell even the present. Went to bed feeling good, woke up feeling good, then it all drained away like it leaked out of a hole in my brain.

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#17

What a day of contrasts, the unexpected bounce then as my day has progressed things have deteriorated beyond words. When u think things couldn’t get worse, they actually can. So many similar experiences Thenkyou to the inhibitors, even in their smallest amounts it’s like a fucking doomsday scenario in less than 24 hours…it’s so unbelievably fucked up but I still stand by the view that these brief windows show ithat this can be recoverable. God bless

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#18

I saw an eye doctor a few weeks ago who confirmed the muscles in my eye and face have collapsed . He dismissed pfs despite me showing him the global loss of tissue from everywhere. More people ask whats happened to my eye when they get up close. The left side of my face has caved in and the eye has recessed like someone of a much older age. That’s despite spending thousands on fillers. I’m continuing to lose weight and strength and I am now markedly underweight. I have multisystem atrophy. On the rare occasion I need to pass a stool and then clean myself my sphincter even feels loose now, . My whole body is in constant pain. The neck muscles, upper spine, whole jaw, have been the latest places to undergo a major assault I cannot open my mouth enough to eat food, I’m having to break it up into small pieces. My eyesight has dropped another notch. Cognitively ive taken more of a hit basic functions and navigation are becoming issues. Im in severe mental and physical pain around the clock. Every symptom has got worse with time. I need rest from this after having this for so long, being increasingly persecuted and subjected to more and more destruction. My baseline is one of complete torture and torment. Repeated use brought me to this advanced stage. Interacting on the forum has become too much for me as of late. I continue to seek God’s comfort. I pray for us all regularly. I’m not an attention seeker I just want this documented somewhere

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#19

The one thing we know for certain. Let’s get a warning on the front page, save lives.

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#20

Agreed @mstone It seems to be what separates those who recover or become stable from those who get worse. Accutane to finasteride, exposure to other similar substances eg ssris is what really hammers the nails in. So many instances The 3 celebs we lost (Heath, Robin and Jacko) were trying allsorts to dampen the fires which brought on the end game. I’m trying so hard to hang on for the day we WILL see a treatment but going past the worst state is breaking. I appreciate you’ve ended up in this group.