Benign MS

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Postby Muu » Thu Aug 03, 2006 9:12 am

Hurrah! Ceasefire.
Thanks for sorting that one out Aaron!
Any votes for allowing our trans atlantic friends to keep Benny Hill? Merely as a gesture of goodwill you understand.
Muu
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Postby tsunamimom » Fri Aug 04, 2006 8:12 am

^^ Oh yes please! And 'Are You Being Served'... they can keep that too.

My neurologist has said my MS is probably benign as I haven't had any more flares after the original onein 2002. I am grateful I was in the US - in the UK, I wouldn't have even seen a neurologist. As it was I had my dx in 52 days from onset - I had a battery of MRIs, an MRE, and a lumbar puncture which confirmed the demyelisation. I have a C2 lesion, have some weird forearm and hand things going on, and weakness in the heat, but nothing that affects my daily life with a reasonable amount of care. I work full time, take care of my kids, home and animals and every day is a blessing. But Iagree with Lyon - life is never the same after that dx even when you are mildly affected. Every morning could be the start of a new, more aggressive flare; I just give thanks every day it isn't!

love
Jo
*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*
Irish blood, English heart, this I'm made of
There is no-one on earth I'm afraid of
And I will die with both my hands untied
*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*
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Postby ljm » Fri Aug 04, 2006 12:35 pm

Do MS patients not see neurologists in the UK? I had my first/only episode in Canada, was seen by a neurologist within about three hours after arriving at inpatient emergency, and had a lumbar puncture in about two hours more. A tentative diagnosis based on the CSF results was given to me at day 8 and I had an appointment with specialist clinic/neurologist at day 25. I still don't have a definitive diagnosis, but thats because of lack of second episode/enhancing lesions to date. The system in fact operated with greater speed than I might have wished...
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Postby Muu » Fri Aug 04, 2006 2:05 pm

Dear ljm
I'm not sure whether all patients that go to GP's in the UK are automatically referred to a neurologist as a matter of course or how much of it depends on the GP's discretion. Perhaps there's someone out there that's more familiar with the course these things take.
In my case, whilst my GP suspected ms, he admitted, with refreshing honesty, that it was beyond his field of expertise and referred me.
As we know, getting the diagnosis, whether it be a frustratingly slow process or alarmingly quick, is a bad news day however it's presented. Years with few or no problems helped me adjust and I wish you the same.
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Postby tsunamimom » Fri Aug 04, 2006 8:54 pm

This is from the MS Society UK's website:
http://www.mssociety.org.uk/what_is_ms/ ... ng_ms.html

If you visit your GP with neurological symptoms that cannot be explained, they may consider the possibility of MS. If your initial symptoms are not too severe, your GP may not take any immediate action. However, if you have another period of symptoms (relapse), your GP should refer you to a neurologist, who specialises in conditions of the central nervous system.

Unfortunately in some areas there just aren't neurologists locally who can see you - a freind of mine in Croyden has never seen a neurologist, just her GP. The waiting list for the specialist is so long, people keep jumping the queue ahead of her - she's not considered critical or an emergency case you see. Until recently you could only get MS medication on private prescription as it wasn't approved by the NHS. So no meds either.

In 1999 the MS Society conducted a large survey of people with MS all over Britain, to find out what they thought of the medical and care services available. Some 16,500 people completed the survey. Here are a few of the results: 81% said clinic staff did not discuss the implications of having MS at the time they were diagnosed; 68% were unable to meet a neurologist to discuss their concerns in the month following diagnosis; 74% felt they did not receive adequate support from the health service around the time they were diagnosed; 66% received no advice about how to manage day-to-day activities to reduce impact on their symptoms; 85% had not been advised by their local health service about the range of services it offered to people with MS.

love
Jo
*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*
Irish blood, English heart, this I'm made of
There is no-one on earth I'm afraid of
And I will die with both my hands untied
*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*
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