Limitless

[the_priest]

I am so glad to hear your most excellent news!!! Fantastic and such a blessing to have Steve back in his shining strength!

Must catch up sometime, Boxing Day or something still available. We have a dog now and the two cats.

Just incredibly happy for you and sorry I've not been around in the past while whilst absorbed with my own life and so on.

Every blessing and joy, peace and strength for the future.

[Horse]

whilst absorbed with my own life

From some of the stuff you have posted, you give an awful lot of your life (energy, heart, etc) to others when they really need it. That's not something you need to apologise for.

[Taipan]

whilst absorbed with my own life

From some of the stuff you have posted, you give an awful lot of your life (energy, heart, etc) to others when they really need it. That's not something you need to apologise for.

Plus one on that!

[Le_Fromage_Grande]

Good luck and make the most of the time you have left.

[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).

[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

[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.

[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?

[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.

[KungFooBob]

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

Stay safe Screwd!

[Mussels]

I have a very good idea how difficult MS can be and how the system is now rigged against you getting help, what you need is to catch cancer so you can get chemo as the best chance to fix your MS. It's a weird world.
Good luck and try not to take everything so personally even though it might seem like everyone is out to get you sometimes.

[weeksy]

PS. I can see some PMs are "on hold" but I am unable to download or view them. I don't know what the status of my membership here is, some features seem to have reappeared since I logged in last.

There are no 'features' simple as that, the restrictions are, number of PMs. We've had this debate, they're on hold because your inbox/outbox/sent items are full, it's literally that simple. I can't make it any clearer. If you delete all your PMs from all folders, the new ones will magically arrive.

As i'm feeling kind and it's new bike day, i've put you back into the Subscribers group, this is for 24 hours. That gives you 24 hours to pick up anything from PMs you want to organise, file, save, delete, read or do anything else with.

Now the not nice bit... this is because of YOU not me. You tried to hold the fact you'd paid the forum £15 against me and hold it over my head that i owed you something. That is why i refunded your £15 subscription. No other reason, no agenda. You made me feel like that if you still had the £15 paid that it was all my fault that i let things happen and i should stand up for you because you'd given me £15. Let me just explain how little i value £15 lol... For the ammount of effort, hassle and complete bollox i have to read, put up with and respond to, not very highly. That's it.
Clearly some people on here like you, i don't dislike you, or like you, you're just a poster on the forum, i base my 'like' on the content people create on here.. That's just me, i'm just a simple boy.