Limitless

[Saga Lout]

Welcome back Steve, Screwdriver, Deadpool, or whoever you identify as today.

Take care of yourself and keep taking the tablets.

[G.P]

Hey Steve, just seen this, sorry to hear your diagnosis but at least now you know what you are up against.
Mrs GP has Multiple Sclerosis, she was diagnosed about 4 years ago. After the initial MRI and diagnosis, she was put under the care of the Neurologist and the neurology nursing team.
Her GP is only ever in copy for what's going on and the local surgery used just for taking bloods etc. Everything else is organised by the Nursing teams and neurologist. If she is having a bad time, she goes straight to them. I'm sure there are regional variances like with everything in the NHS, but I'd be making best friends of the neurology dept.

The Meds are all about preventing further lesions on the brain. I was amazed that from the half dozen drugs on offer to her, non of them had been on the market more than 30 months - shows how fast research is progressing. The side effects pose as many problems as the MS itself but at least with Mrs GP she has no more lesions than from the first attack she had.

All the best with your battle.

[Screwdriver]

Hey Steve, just seen this, sorry to hear your diagnosis but at least now you know what you are up against.
Mrs GP has Multiple Sclerosis, she was diagnosed about 4 years ago. After the initial MRI and diagnosis, she was put under the care of the Neurologist and the neurology nursing team.
Her GP is only ever in copy for what's going on and the local surgery used just for taking bloods etc. Everything else is organised by the Nursing teams and neurologist. If she is having a bad time, she goes straight to them. I'm sure there are regional variances like with everything in the NHS, but I'd be making best friends of the neurology dept.

The Meds are all about preventing further lesions on the brain. I was amazed that from the half dozen drugs on offer to her, non of them had been on the market more than 30 months - shows how fast research is progressing. The side effects pose as many problems as the MS itself but at least with Mrs GP she has no more lesions than from the first attack she had.

All the best with your battle.

Thanks. I may question you on this in the future if that's ok.

I am waiting for the side effects to subside and for the treatment to settle into my new normals. Still a bit of a rollercoaster but less extreme emotionally.

[Supermofo]

Only just seen this (tend to stay mainly on the bike stuff). Glad you are in a better place at the moment it sounds like it's done you wonders. Good luck with everything I'd recommend staying away from the news, I keep getting sucked into it but I don't think it does me any good it's a never ending doom scroll.

[G.P]

Thanks. I may question you on this in the future if that's ok.

I am waiting for the side effects to subside and for the treatment to settle into my new normals. Still a bit of a rollercoaster but less extreme emotionally.

Anytime
Side effects are just as much, if not more of a challenge than the condition itself. the Meds merely hold back progression of the disease but sometimes at a big cost. Mrs GP is swapping Meds next month, the one she's going on means she needs to be admitted onto a ward for the day and closely monitored as initial side affects can literally kill you - highly unlkiely but it does show how serious some of these meds are.
I'm not an expert and all this is just from our experience. Mrs GP does go on a couple of M S forums but recommends avoiding international ones as they tend to get swamped with mad americans!

[Screwdriver]

The dose they gave me 500mg/day (all in one go) is, I now understand, a very high dose!

It certainly kicked the shit out of me but in a good way. My reaction was like striking a bell in the way I would hit peaks and troughs of euphoria and sadness (NB lit. sadness rather than depression as I know it). Boundless energy lasted a week or so as did the mildly "loved up" feeling but that has either faded away or I'm just getting used to the new normal.



I was worried about some of the side effects but I have missed most of the bad ones. I am left with new sensations like hunger which had been missing and as I write this, an uncontrollable "flutter" in my left arm appears to have subsided. Unfortunately, I started smoking again (I binned all my vape gear - just in case!) but hopefully I can get rid of that once I get my life back together.

I need to find some mechanism for documenting this with my neurologist because if this drug can give me such a lift, obviously I want more! Still waiting to hear what the long term medication might be. I assume a similar type of drug in sustainable, smaller doses.

Man it would be nice to experience that "Limitless" kick again though...

[Asian Boss]

Have you tried Dr China? On the Internet.

Dr China will supply a range of prescription medicines without consultation for a modest charge.

[Screwdriver]

I did a quick online check to see if it was available (and at what sort of price!).

I am reassured it can be had quite cheaply but am going to see how things progress before I consider self medicating.

Thanks for the link though, it may come in handy....

[Fruity]

Best wishes. Stay positive

[formula400]

mate, all there best, I hope it sorts you out, and I look forward to welcoming you back to the Ritz at some point.

[Screwdriver]

mate, all there best, I hope it sorts you out, and I look forward to welcoming you back to the Ritz at some point.

Have to say that was quite a spectacular highlight for me. Can't thank you enough, the food was exquisite and the organisation of the kitchens like seeing the inside of a mechanical watch. Spotlessly clean, perpetual synchronised motion, absolute precision.

A great reminder for me that there are plenty of extremely talented and capable people who quietly get on with being very successful in their chosen careers.

[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.

[Screwdriver]

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.

..and just as I was saying how many amazing people I have met on this forum, another one pops up!

Hi Gordon, I am feeling pretty ordinary now, not the hyper version from just a few days ago. You will be able to spot the difference from the chap you helped through some of the darker times - but you will not recognise the house now! Well, the kitchen at least.

The rest of this place looks like it belongs to someone else. Someone who is very untidy and an obsessive hoarder. The extraordinary energy and motivation has left me now, but at least I can see the carnage so hopefully will carry on slowly bringing my house in order. In both meanings of the phrase.

[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!

[Screwdriver]

Update.

Looks like I didn't update on some of the horrific side effects, one of which was shingles. With my immune system disabled by the drug, an old chickenpox virus which had been dormant decided to inhabit my face. Yes. Really fucking horrible, unbelievably painfur for about 3 months. I have the scars to prove it... That was Sept/Oct/Nov for me.

I finally had an appointment @NHS to see how I was getting on/if I was dead yet.

Anyhow the actual face to face (!) consultation was with a rheumatologist which I assumed was something to do with aching joints but was actually a diagnosis from the spinal tap I had for my birthday (no not this on, last year!). More to do with bloods and inflammatory disease, immune deficiency etc. He was horrified to discover I'd been abandoned and put me back on prednisolone albeit a drastically reduced dose. Eight tablets (!) but only 20mg/day instead of the rather more dramatic 500mg.

It's kind of "meh". I get wild mood swings, panic attacks, feeling of not being me etc. but there's no upside unless "not being me" is considered a bonus. You may titter though I'd like to keep all the funnies, and especially the "oh well that explains it" in this thread. It is difficult enough to come to terms with an inexplicable and incurable brain disease without it popping up out of the blue everywhere I go.

Then I got a long awaited call, a telephone consultation from the MS nurse at CharingX. It is confirmed as non presenting, relapsing remitting multiple sclerosis. The drugs are supposed to mitigate the onset of the disease but there is no cure. I know how this ends and that's quite challenging to carry around and another reason I post here so I don't spread it around either. It's pretty grim but hey, no one gets out alive so...

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??

[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).

[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...