Please see Styx thread on the Registered Shipmates consultation for the main discussion forums - your views are important, continues until April 4th.
Multiple sclerosis SUCKS too. And other neurodegenerative conditions.
Merry Vole
Shipmate
in Hell
Chances are you know someone who is affected by MS. The prevalence in the UK is around 190/100,000 and it is around 2-3 times more common in women.
I don't have MS but my sister has it very badly for the last few years and more recently Mrs Vole was diagnosed with it and had to take early retirement. She can still walk -just.
I hope that like the Cancer SUCKS thread there may be opportunity for mutual support.
Also maybe sharing of experiences of treatments and of the medical care received in general (Bouquets and Brickbats!).
Also maybe other conditions such as Parkinson's disease, motor neurone disease (ALS) etc would fit in this thread.
I don't have MS but my sister has it very badly for the last few years and more recently Mrs Vole was diagnosed with it and had to take early retirement. She can still walk -just.
I hope that like the Cancer SUCKS thread there may be opportunity for mutual support.
Also maybe sharing of experiences of treatments and of the medical care received in general (Bouquets and Brickbats!).
Also maybe other conditions such as Parkinson's disease, motor neurone disease (ALS) etc would fit in this thread.
Comments
At least treatment of MS has improved with biological agents; back in the day it was steroids only with all the nasty side effects.
And @Sojourner, yes, motor neurone disease is horrible. I was involved in the palliative care of a 50-something retired police officer with this condition and was with him when he died. I have to say the MND Association was very helpful and I think nowadays with medications including midazolam death need not be excruciating.
Having said that Mrs Vole says that if her MS ever gets as bad as some cases can she wants a one-way ticket to Switzerland. If I was brave I would start a Purg thread on 'physician-assisted dying' as this is starting to be seriously addressed again and Scotland may be the first part of the UK to legalise it.
I will post later about how biological agents to treat MS are being unfairly rationed, in my view, by NICE.
Yet again, I never fail to marvel about how folk run a mile before expressing a view on neurodegenerative diseases which are very common, yet everyone has their 2 bob’s worth re cancer.
Just my 2 bob’s worth…
Epiphanies might be a good place for such a discussion - it being a very sensitive subject.
I am more than fine and not remotely pissed off, thanks. I’ve noted before & have noted again that neurogenerative diseases are not exactly a hot topic on these boards ( this thread makes it clear in terms of lack of contributions compared to the pages and pages on the cancer thread). Dunno why, not dramatic enough, not exciting enough, not topical enough, who knows?
Ruth has said she has no idea why such a thread would not fly in Epiphanies. Fine. I suspect it would not for the presumed reasons it has hardly flown in Hell.
However if a few others apart from you & I put in a contribution I might be prepared to consider otherwise ( not that it is a hot button issue for me.
Hope that is clear to you now.
Hoping the op I'm waiting ( and waiting and waiting) for will sort it out. I’ll have two discs replaced and a cage in my neck.
But there are no guarantees.
😢
This one?
Thanks!
As for cancer, I fear that on any given day, I DO know at least one person with it; the incidence is very high. Five in my immediate family in the past five years, plus Rossweisse and two church friends.
I am another person who, while not dealing with neurodegenerative diseases, is sympathetic as dealing other genetic conditions that can only be managed to try and maintain as much function as possible, and with the knowledge that deterioration is only too likely.
As for “ deterioration is only too likely”; I beg to differ. A lot of water has gone under the bridge in the last 50 years and not all neurodegenerative diseases have the same terrible prognoses as they did in my youth. The world is full of incurable conditions including ageing ( as I am having to accept).
I thought you were referring to discussion of death with dignity / aid in dying.
I recall the gradual decline of our recently departed Sir Kevin: there were some odd posts years ago and on at least one occasion he was sharply pulled up by a Host. I remember thinking that the reproof was a bit OTT given that his contribution was harmless, if off topic. He never posted again and very short time later Zeke came on board to tell us the diagnosis; all of a sudden it made sense.
DocTor
Hell host
The Host in question ( RIPRIG) was someone well known to me IRL and for whom I had a lot of time.
Stop looking for nastiness where it isn’t.
Cease and desist here.
Doc Tor
Hell host
Referred to the rest of the Admin team for a C6 foul.
Doc Tor
Hell host
The last few posts by @Sojourner are C6 violations.
ANY and ALL comments about official Hosting actions may only be done in the Styx, other than brief acknowledgement.
There will be no more warnings. The next official action will be suspension.
-RooK - Hellhost Reservist
[ /HOSTING ]
I have been diagnosed with a stenosis of the lumbar spine, as a result of the gradual loss of feeling in my feet and legs. This now limits my standing and walking to a few minutes at a time, and usually no more than half an hour maximum. As @Boogie says, extremely life-limiting.
I'm scheduled for an MRI this coming Tuesday to get a better idea of the extent of the problem, then back to the neurosurgeon in a couple of weeks. He is confident that a laminectomy will relieve the problem.
Fortunately, I have held top-level health insurance with our union-affiliated health fund for almost fifty years, so should have the surgery prior to Christmas in a private hospital with no topup charges. My recent hernia repair in the public system took 18 months from referral to completion, so Boogie has my sympathy in the waiting, waiting, waiting.....
My friend’s son, who is only 40 is having the same problems and is on the list for the same op. These things can hit at any age.
You're right about having good insurance and lucky to be able to arrange it as you did (I assume that the premiums are less than usual market ones for that fund).
@Gee D the last couple of years have shown the value of good insurance. From the cardiac arrest and catheterisation in May 2019, I've had three further surgeries with the approaching fourth soon. I've spent more time in hospital in that brief period than in the previous 68 years. As you suspected, the premiums are less than the general market and benefits are substantially better than commercial funds.
85% of MS 'cases' are relapsing remitting. (cf primary progressive).
And DMTs (disease modifying therapies) are 'allowed' to be prescribed, or changed to a different DMT depending on the presence of relapses.
A relapse (or flare-up or attack etc) is defined as 'the appearance of new symptoms or the return of old symptoms for 24 hours or more' (assuming other cause of symptoms eg infection is excluded). But most (all?) specialist teams will only count it as a true relapse if new or active lesions are seen on an MRI scan. But the availability of MRI (like most things in the NHS) is limited by waiting lists. So if your MRI scan is a few weeks after the suspected relapse then it may not show as 'active' on the scan. So then you don't qualify for a change to a different DMT.
Mourning and relief intermingled.
So sorry 😢🕯
He did pretty well considering everything. Marijuana got him through the rougher times. Pancreatic cancer is what finally did him in.
@Merry Vole - that sucks - is it universal?
(My daughter's just changed consultants and the difference is huge. The previous one was a total waste of time, literally - he did nothing, but seeing him meant a 6 hour round trip to attend, that being a wrinkle as to how the NHS trust regions are carved up.)
@Curiosity killed I only know that that is what happened to Mrs Vole. But at least her Tecfidera is low on side effects. I'm glad about the new consultant for your daughter. My experience is that MS sufferers mustn't accept a sort of pessimism or apathy (from the MS team) that seems to set in when the disease seems to be progressing towards a certain level of disability; the Expanded Disability Status Scale (EDSS) is important because above a certain score you won't qualify for a DMT. (see mssociety.org.uk for more details).
My sister's MS quickly reached a high score so she has sadly never been offered any treatment.