Limitless

[Horse]

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 )

[Count Steer]

Here's the interesting part:

Incredibly I am being offered a smorgasbord of drugs. They are going to send me a list of potential treatments with their associated side effects for me to choose from! Seems incredible really but I shit you not; there is a long list of palliative drugs oral/injection/drip that I can choose from and I find that quite extraordinary.

What if I pick the wrong one??

I don't think that approach is uncommon in situations when really only the patient can decide if they feel the benefits outweigh the side effects. You should have the option to change if one proves to be more hassle than it's worth.

(I'm following someone's weekly diary and at one point he asked the consultant if there would be more radio/chemo for his pancreatic cancer and the (French) consultant said 'Do you want more?' ie only he could decide if it was worth it).

[Screwdriver]

I don't think that approach is uncommon in situations when really only the patient can decide if they feel the benefits outweigh the side effects. You should have the option to change if one proves to be more hassle than it's worth.

(I'm following someone's weekly diary and at one point he asked the consultant if there would be more radio/chemo for his pancreatic cancer and the (French) consultant said 'Do you want more?' ie only he could decide if it was worth it).

There are many occasions where I am simply not in a position to make a considered judgement. I guess what I really need is a dialogue but we'll see if I can at least discover some method for QandA. At the moment I might just as well be being treated by Dr. Google.

It is a long term palliative drug. It will take months if not years to see any effect and that "effect" will be to see how much additional brain damage (inflammation/scarring/loss of tissue) has or has not occurred. Last three years have gone from 3, to 5, to 8 sites of permanent loss. One of them took out a part of my optic nerve.

Problem is, the brain pretty much controls everything and my own immune system can attack any part of it (at any time!). That's why most people assume MS sufferers are zombified when some limb or other happens to be the target nerve system and stops working. That's my take on it and why they call it "non presenting". It is starting to "present" itself as fluttering muscles in my left arm though that might be where the nerves were damaged during neck surgery.

Chances are it could have been the surgery which introduced the bug that somehow got into my spine or weakness from that surgery which allowed the preexisting condition to flare up. Stacking the bike at Pembrey shortly after neck surgery didn't help...

[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.

[Potter]

A friend of ours has MS and she generally does ok, but it can be triggered by physical stress (like another illness - she's currently putting of an Op with general anaesthetic because they think it could trigger a relapse and she thinks a previous Op might be the thing that triggered it in the first place) and (really importantly) certainly mental stress - she had to quit her high powered job with a big multi-national because the stress was a problem. I think everyone is guessing about how to properly manage it but she says a decent diet, keeping up with vitamins and reducing all forms of stress* seems to keep her mostly on the better side of it.
(* for you that might include reducing arguing with people that are beneath you on the internet)

I genuinely sympathise mate (FWIW), you're one of the sharpest and brightest people I've ever met and 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. The world and this forum are better for having people like you in them, so please don't consider leaving either.

Merry Christmas.

[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.