Limitless

[ZRX61]

I'm deathly allergic to that med they're giving ya. The fact that the first (& only) time I was given it happened to be at a hospital is the only reason I'm still kicking.
One second I was talking with the Dr & the next thing I know I'm laying on the floor looking up at a bunch of medical people one of whom is holding the paddles... "oh, welcome back, we won't give you that medicine again.."
Me: WTF happened??

[Couchy]

I’d missed this, hello mate good to see you back here. I’ll keep checking in and hopefully the meds keep working. Now get back on with a build or two if you can I liked them

[Screwdriver]

I'm deathly allergic to that med they're giving ya. The fact that the first (& only) time I was given it happened to be at a hospital is the only reason I'm still kicking.
One second I was talking with the Dr & the next thing I know I'm laying on the floor looking up at a bunch of medical people one of whom is holding the paddles... "oh, welcome back, we won't give you that medicine again.."
Me: WTF happened??

It is a ferociously powerful drug. It has to be to get into the brain which is a very heavily protected space.

The side effects of some of these more exotic drugs make sobering reading. Very easy to dismiss them as "a risk worth taking" until one of them backfires and takes you out.

The most effective drug I am being offered has the highest probability of death/disability and only a 50% chance of reducing the effects of MS relapses. Most hover around 30% remembering you take them for years. They are slim pickings.

[Screwdriver]

I’d missed this, hello mate good to see you back here. I’ll keep checking in and hopefully the meds keep working. Now get back on with a build or two if you can I liked them

I cashed in a portion of my pension which is a small fortune to me but not even a flash car to some on here. It is certainly enough for me to get my teeth into some rebuilds and I really need to start going through the backlog!

[Mussels]

I know how this ends and that's quite challenging to carry around

My wife has had MS for nearly 20 years, there have been some ups and downs but most people wouldn't notice she has it. It can shorten life expectancy but getting it at your age means it's pretty likely not to make much difference.

Disability benefit rules are crappy with MS, relapsing remitting doesn't qualify for any help but you still need to buy plenty of stuff to help you cope with relapses.

[Count Steer]

The most effective drug I am being offered has the highest probability of death/disability and only a 50% chance of reducing the effects of MS relapses. Most hover around 30% remembering you take them for years. They are slim pickings.

That's the gist of my earlier post re options. The consultant can only advise up to a point, only the patient can say what level of risk they're prepared to take and subsequently whether the improvement in one area is outweighed by loss of quality of life. However, the least you should expect is a series of deep dive discussions with someone with experience of outcomes to date of the treatments. (Rather than both you and the consultant working from Doctor Google data which sometimes seems to happen if you don't get the right one).

The MS Society might assist but sometimes charities are only too happy to steer people into guinea pig treatment paths because they want as much data as they can get on novel treatments. Sometimes they seem to be the prime movers on some of the trials.

[Mr Moofo]

I have been diagnosed with multiple sclerosis. It is a very complex and wide ranging illness not sure if it's a bug, bacteria, virus, but there are "markers". It gets into you or it's part of your inherited genetic code, whatever, it eats you up. The markers were discovered (some time ago!) in the spinal tap/ lumbar puncture

For me (so far!) this has been "non presenting". You can't see it, there is so far as I can tell, no spasticity but there have been plenty of signs. The visual acuity is the biggie but countless "heart attacks" (lit random SVT, my physical heart muscle is in excellent shape), gastrointestinal agonies

May I ask whether there were and signs years ago that you now, with hindsight, can recognise?

Reason I ask is that your problems are genetic, mine are congenital and, with that hindsight, I can see several things that now - having read the extensive list of associated symptoms- are probably linked to my Chiari. But all of them are just 'normal' things that people often have:
- sleep apnea
- poor hand/eye co-ordination (eg rubbish at bat/ball sports)
- iffy sense of balance
- eyes affected by bright light
- tinnitus
But, obviously, none would have been diagnostic. It was other signs (nystagmus, over-compensating knee reflexes, and more) that prompted further investigation, then definitively by MRIs (image here:
http://revtothelimit.co.uk/viewtopic.php?p=14827 )

Erm - doesn't everyone have the above?
I do!

[weeksy]

I have been diagnosed with multiple sclerosis. It is a very complex and wide ranging illness not sure if it's a bug, bacteria, virus, but there are "markers". It gets into you or it's part of your inherited genetic code, whatever, it eats you up. The markers were discovered (some time ago!) in the spinal tap/ lumbar puncture

For me (so far!) this has been "non presenting". You can't see it, there is so far as I can tell, no spasticity but there have been plenty of signs. The visual acuity is the biggie but countless "heart attacks" (lit random SVT, my physical heart muscle is in excellent shape), gastrointestinal agonies

May I ask whether there were and signs years ago that you now, with hindsight, can recognise?

Reason I ask is that your problems are genetic, mine are congenital and, with that hindsight, I can see several things that now - having read the extensive list of associated symptoms- are probably linked to my Chiari. But all of them are just 'normal' things that people often have:
- sleep apnea
- poor hand/eye co-ordination (eg rubbish at bat/ball sports)
- iffy sense of balance
- eyes affected by bright light
- tinnitus
But, obviously, none would have been diagnostic. It was other signs (nystagmus, over-compensating knee reflexes, and more) that prompted further investigation, then definitively by MRIs (image here:
http://revtothelimit.co.uk/viewtopic.php?p=14827 )

Erm - doesn't everyone have the above?
I do!

That's why we're all shit on bikes.

[G.P]

I know how this ends and that's quite challenging to carry around

My wife has had MS for nearly 20 years, there have been some ups and downs but most people wouldn't notice she has it. It can shorten life expectancy but getting it at your age means it's pretty likely not to make much difference.

Disability benefit rules are crappy with MS, relapsing remitting doesn't qualify for any help but you still need to buy plenty of stuff to help you cope with relapses.

My wife has had relapsing remitting MS for around 5 years. the biggest challenge is finding drugs which don't have side effects which completely disable her, she's running out of options. That said, most of the available drugs have only been available for a few years, the rate of research and resultant new drugs is impressive and gives hope.
I understand that eventually many patients with Relapsing Remitting MS develop Secondary Progressive MS, but even then, it can remain non active, non progressive for long periods of time so there's no straight line..

[Horse]

extensive list of associated symptoms- are probably linked to my Chiari. But all of them are just 'normal' things that people often have:
- sleep apnea
- poor hand/eye co-ordination (eg rubbish at bat/ball sports)
- iffy sense of balance
- eyes affected by bright light
- tinnitus

Erm - doesn't everyone have the above?
I do!

That's why we're all shit on bikes.

For varying values of shitness

I've had, for many years, one additional and weird symptom that is diagnostic for Chiari:
Cough or sneeze, then after a few seconds 'pins and needles' move up over my scalp, ending with a headache which fades after a few more seconds.

[Screwdriver]

...I've no doubt that without a debilitating illness that has dogged you like this then you'd be flying high, so I get it if you're feeling a bit cheated by life.
Merry Christmas.

Thank you for the kind words, I'm still here (!) but I recognise the signs now when I become let's say "agitated" and should simply step away. I can't tell you how much it means to hear such kind words spoken of me, it really helps.

I cannot explain how it feels to start losing your mental capacity. I don't mean it suddenly turns you stupid, nor even does it affect your logic, in the parlance of MS it is a brain fog. It really slows down your thought process which is frustrating, the frustration leads to stress, stress leads to more fog until, well until I suppose you can hardly think at all.

I think the most difficult thing I am experiencing right now is the disappointment with this current level of prednisolone. The last batch was quite extraordinary. I became the person I was all those years ago. Huge bundles of energy, my mind was like a sparkling clear crystal, everything was super easy and I couldn't wait to get on and do stuff. There weren't enough hours in the day.

Nothing like that this time. In fact quite the opposite. But I understand you can't live on Methylprednisolone, it is a corticosteroid and long term use has severe penalties. I need to find out if I may actually be allowed to make that choice anyway. Without wishing to sound too maudlin, I pushed for "a number" and was told 60-80 months. There is a vast spread of course but you can't just keep losing brain tissue and it don't grow back.

The leading cause of death is dementia and Alzheimer's disease. But who really wants to hang on till the last possible moment when quality of life is the key, not quantity? I may ask if I can get myself on a much stronger dose of Methylpred and hang the consequence. The candle that burns twice as bright etc. I have seen the light as described in the first paragraph here which I read now as a dim and distant memory. I want that guy back...


All is not doom and gloom. I am still very good friends with my ex. and her son (5 year old bundle of energy) is a sheer joy to be around. I'll be heading up North after Xmas for a few days of childish mayhem...

[Screwdriver]

Well I did a bit of digging due to the difference I am experiencing "this time around" with prednisolone.

I did look up the difference between Methylprednisolone and prednisolone because I didn't believe they were the same thing. Turns out they are nothing like the same!

So then I look up the dosing which is also vastly different. 500mg/day Methylpred cf. 20mg pred. That level of dosing, 500mgMp is typically only given to specific cases like Sarcodiosis which rings a bell with me. In my dim and distant past I recall that word being used during a phone consultation (I have no paper trail for this treatment which is why I write here).

That leads me here: https://www.webmd.com/multiple-sclerosi ... arcoidosis

Because another clue is the to-and-fro Multiple Sclerosis yes it is, no it isn't I keep getting depending on which consultant I spoke to last.

Now if that is the case and I do in fact have Sarcoidosis (neurosarcoidosis at that) then I SHOULD have been given a short sharp shock treatment of 500mg Methylprednisolone FOLLOWED BY a long duration course of prednisolone. No wonder my last consultation with a rheumatologist (the chap who investigates spinal tap) was horrified and stuck me on pred' that same day.

So now I need to establish whether or not the regular treatment for MS is beneficial (or potentially harmful) if the actual prognosis should be a (somewhat related) condition of Sarcoidosis.

[Screwdriver]

In the meantime WHO yes the privately funded plaything of Billy Gates and his rich chums, have published data they have known since day 1.

https://pesquisa.bvsalud.org/global-lit ... 20?lang=en

COVID-19 vaccine can cause Multiple Sclerosis as well as causing a relapse in anyone susceptible to it.

VERY difficult to simply "find" this information. The published report is buried and censored from Google etc.

If you use duckDuckGo you might find it but you'll have to use the information above. So you literally have to know what you're looking for before you can find.

At the same time you'll be bombarded with "conspiracy theorist" nonsense which frankly, is beginning to look a bit lame now don'tcha think...

And again, for anyone who doesn't care or doesn't want to know; don't read my stuff. Ignorance is bliss.

I wonder if this will make it into mainstream news?

[weeksy]

In the meantime WHO yes the privately funded plaything of Billy Gates and his rich chums, have published data they have known since day 1.

https://pesquisa.bvsalud.org/global-lit ... 20?lang=en

COVID-19 vaccine can cause Multiple Sclerosis as well as causing a relapse in anyone susceptible to it.

VERY difficult to simply "find" this information. The published report is buried and censored from Google etc.

If you use duckDuckGo you might find it but you'll have to use the information above. So you literally have to know what you're looking for before you can find.

At the same time you'll be bombarded with "conspiracy theorist" nonsense which frankly, is beginning to look a bit lame now don'tcha think...

And again, for anyone who doesn't care or doesn't want to know; don't read my stuff. Ignorance is bliss.

I wonder if this will make it into mainstream news?

What does that change? You're not going to try and contract it either way. The fact there's an extra side effect doesn't change anything does it?

[Screwdriver]

What does that change? You're not going to try and contract it either way. The fact there's an extra side effect doesn't change anything does it?

It changes nothing for me. What's done is done.

Might help anyone who wants to make in informed decision as to whether or not to trust a company like Pfizer or indeed the WHO.

Also highlights the extreme censorship of the global mainstream media, hugely funded by guess who: Pfizer...

[Horse]

The introduction seems to say "[you may be] damned if you do, damned if you don't"


Infection with the SARS-CoV-2 coronavirus can lead to a wide range of acute and also chronic disease manifestations.

The rapidly developed vaccinations are highly effective in preventing severe disease courses and have been proven safe.

Both natural infection and, to a much lower extent, the mRNAbased vaccinations can be accompanied by transient autoimmune phenomena or onset of autoimmune diseases.

[DefTrap]

Everything you put in your body has a risk Vs a benefit. That exact premise of risk Vs benefit is written into local and international law when it comes to drugs trials. Finding two cases of a condition that could be linked to a vaccine delivered to millions of patients isn't evidence of censorship or cover up, it's actually quite likely, even normal I'm afraid. It's certainly not buried because look there it is, published.

And again, for anyone who doesn't care or doesn't want to know the bleeding obvious; don't read my stuff. Ignorance is bliss.

[Screwdriver]

OK so I see some threads talking about me so I think I'd like to chip in, in the relevant topic.

Regards mental health issues, I suppose that's not too far from the truth but having been seen by a number of psychiatrists, you can rule out paranoia and schizophrenia to name but two. Still on the cards, autism/Aspergers or ADHD. I'm told the waiting list is 18 month for a response. It's been that long and I finally chased it up with my GP who tells me he has reapplied for an assessment so I'm back on the list. Ask me in 18 months.

Closer to the actual situation is immense stress. Years after I first mooted the idea when I lost a tranche of my visual field, I have been diagnosed with multiple sclerosis. Apart from the loss of visual acuity, over the years I'm losing full use of my left arm, went through a period of extreme heart palpitations and some bowel issues I don't even want to think about.

All of those physical systems were checked, poked prodded and tested by individual specialists in their field. eye doctors, heart specialists, gastroenterologists et. al. Everything looked fine. Even with a full slice missing from my vision (I didn't see circles, I saw Pacman) my eyesight was declared 20:20. My heart is in great shape, arteries are clean as a whistle, as are the other routes. I am not surprised, I kept myself in shape all these years. Turns out, it was indeed all brain related.

Like I say, years later (and years ago now!) I was informed there were anomalies within my brain. First (after the visual defect) there were 3 anomalous sites (of demyelination) then after the next scan, 5, then 8. Anyone familiar with the Fibonacci sequence can see why that leads me to believe there is an infection "flowering" inside my skull. Eating into brain matter, leaving scars and upsetting whichever system that particular area happens to control.

The brain can metastasise and mitigate tissue loss by finding alternative paths, creating new neural networks, circumventing the damage but the disease is incurable and the stress of that is, well, I would say "driving me nuts" but I invite anyone to just stop and think for a moment what it is like to live under the threat of sudden, permanent loss of function in some random body part. It is the sword of Damocles. How to fuck am I supposed to enjoy anything?

On top of that, I dare not accept a C*V*D innoculation/vaccine/whatever which even though I believe that has been shown to be more of a moneymaking scam than any sort of protection, that does leave me vulnerable to societal pressures. Secondly, since MS is a form of immune deficiency, if I catch that bio-engineered virus, it will be extremely serious, so much so that I have to carry a card. Do not pass go, go straight to intensive care sort of thing.

On top of THAT I am still not classed as disabled, I am not entitled to any sort of disability benefit so I would have to apply for a job (or pretend to) in order to claim jobseekers. Having been through that mill once; never again. I am not too proud to sweep the roads or stack shelves in Tescos but with the stress I am under and the complete lack of a braintomouth filter, I would not last 5 minutes in a regular workplace.

All of my employment has been somewhat specialist and to put it bluntly, people almost expect their geeks to be antisocial misfits. If you can do that one thing that no one else can and do it well, your employer will turn a blind eye to virtually anything. That is no longer true and some of the outbursts or dark, sardonic humour I am capable of would have seen me thrown in jail let alone get me sacked. This may be the reason behind my "obsession" with the woke nonsense which I see both as a widespread mental illness in itself and a potential trapdoor designed specifically for people like me to fall into.

Our society has not yet evolved to cope with social media.

I made it though my personal troubles and I am now "living" on one or two of my pensions, MoD/BBC with Siemens and the state pension to look forwards to. I have a small pile of cash but it has to last me the rest of my life. It is enough to buy a reasonable car or perhaps a watch that @Potter might admire, instead, I'm watching this small pile of cash gradually dribble away, punctuated only by the occasional spurt caused by ridiculous bills from the energy companies.

Anyhow, this is a catchup; they are (finally!) putting me on a drug that **might** slow down the infection but will have as yet unknown side effects. They drop off the first batch tomorrow and I get trained how to self administer an injection. Deep joy. Then I'll be on a monthly(?) trip to hospital to see what it's doing to me. I'm not looking forwards to finding out actually. On Wednesday though, I am looking forwards to finding out what the fuck is going on with my left arm which is giving me pins and needles as if I just twatted my funny bone with a ball pein hammer. To be honest, I am not expecting it to be good news. It's either arthritic (unlikely), MS related (maybe) or nerve damage from a botched foraminotomy and resulting stenosis (my best guess).

...and that ladies and gentlemen is how my life is going to progress from now until I die. Endless injections, relapse and remitting MS and a pension scheme that would make a church mouse cut back on its cheese.

More annoying for me is I know what I am still capable of when the mood takes me but my mood swings are becoming quite, err, pronounced. Some days I literally cannot do anything. I get up dog tired, check on the forum(s) for some level of social interaction, test out a few ideas on the world at large until a crushing weight of tiredness hits me as if gravity just got stronger and I fall to sleep on the sofa, wake up and go back to bed. I'm not even kidding. That's about half of my current life. I actually think that aspect of my behaviour is indeed a mental health issue. I have lost my mojo.

I wish my current state was only a mental health issue. They can be fixed but here is no cure for MS, it's just a gradual slide with the occasional bump when you lose some function you really don't want to be without. Relapse and remit they call it. Apparently a potential "relapse" can be heart related, another one might be lung function, neither of which you can do without for long.

I did apologise for getting so wound up on this forum and I did mean it. I really don't want to bite anyones head off but I can only take so much. "ORLY", I hear you say, "why don't you just fuck off then". I'll tell you why, it's because I have nowhere else to go. I can only thank @Weeksy so many times for putting up with the fallout but in my defence, I only ever respond in kind when someone goes out of their way to wind me up.

I put that in bold because I thought the idea was when someone goes out of their way to deliberately ruin a thread of mine, I report it rather than escalate. That process is not working. I report these issues, the report gets closed, I then react to the insult(s) and incredibly - I get the blame! Then my thread is locked or deleted. That has happened many, many times now and while I do not expect any moderator to follow me around, I was hoping for some level of fairness. It's not as if the real culprit is difficult to spot...

I also directed my apology towards mentioning my illness during various conversations. I am not holding it up like a shield as if one should never mock the afflicted, it just sometimes pops up especially when I am being accused of tinfoilhattery as if I am some kind of nutcase. As you might now understand, it is stress. I am particularly fearful that one day, inevitably it transpires, I will in fact literally lose my mind. If people have to rely on insisting that loss has already occurred in order to refute my opinion, they will be wrong. “When the debate is lost, slander becomes the tool of the losers.” I will leave this place long before I lose my mind.

Having said all that, I can't resist sharing my latest, favourite aphorism because, while I do try really hard to keep my posts on topic, I am still human.

Here goes:

"I may not be a gynaecologist but I know a cunt when I see one".

Well it's new to me anyway. Shame to end on such a note but I thought it was hilarious and might even come in handy...

[KungFooBob]

I prefer "I'm not a pancake expert, but I know a tosser when I see one"

Stay safe Screwd!

[Screwdriver]

...but it is so rare to be able to use the "c" word these days...