It is very depressing, Bromley. MS kills slowly, humiliates, changes personality, and causes total distrust in one's body and mind.
We must be on exactly the same wavelength. These sites offer hope, through highlighting new treatments etc, and a good place to discuss experiences, but it's also an opportunity for a reality check. When I first met my MS nurse I asked whether it would be useful to go to my local MS society meeting - knowing that I was a sports mad active man with a very young family she said it might be best not to. The real killer for me is that my young children won't ever know the real me - active, happy, enthusiastic etc. My father came out with the classic line - 'you have to deal with the cards life deals you'. Easy to say if your 70 and have seen your kids grow up, and enjoying a retirement after 45 years of working.
This is beginning to sound like a sob story but, with a few exceptions, this vile disease is unique - physical damage, mental damage, life shortening etc etc. Unlike many individuals we know our future - or can have a good stab at it. Unlike other diseases you never get better and worsening is guaranteed. A report in the UK last week said that men who are 65 have a good chance of making it to 90. Good for them!
I have to agree with Harry that the drive for more and more powerful drugs that suppress the immune system are unlikely to be the answer. The one good neuro I saw said that a disease is auto-immune until the virus [or bacteria] is found. Every MS researcher should be pulled off their pet project and identify the cause / causes (as happened with stomach ulcers and some cancers). The once identified we could move forward in a sensible way. Paying researchers to look at the effectiveness of copaxone + chewing gum + garlic has proved a waste of time. The societies keep telling us that there are now disease modifying drugs. Really? What about SP or PP ms? In what ways do they 'modify' the disease? Do they stop sufferers going from RR to SP? I've seen no evidence. 'Modify' in this context means that make you feel that you are getting some treatment (even though pretty ineffective) rather than halting or significantly delaying the progress of the disease!
This has not been a good year for MS research despite the positive spin of the national societies. My bad mood has also been influenced by the NMSS website which has a picture of a toilet with handrails etc etc. Nice reminder to those with bladder and bowel problems.
To walk, to work, to play, to see, to make love. Fairly basic requirements. But MS manages to impact on all / some of these.
Perhaps I'm the only one who has these fears / view of this disease? But I don't believe I am.
Perhaps tomorrow we will get some good news (like the cervical cancer vaccine announced today)!
Sorry to vent today - but we're all entitled to an occassional off day.
Postive posts will resume in due course.