They think it's MS

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They think it's MS

Postby Elsbeth » Tue Oct 27, 2009 11:10 pm

Hey peeps.

I've been having some tests of late and there has been a bit of progress.

I am not under the care of an OT again and aphysio from my community rehab team to help me as I have gotten much much worse. I am currently in the middle of a B*st*rd of a flare up which is so far now entering week 3, 2 of which my BF has had to off work which is breaking my heart in all honesty.

My doctor and my physio and OT all think that I am showing more than a smidging of MS symptoms and that all they ae waiting for is my MRi results.

I'm kinda freaking out a bit in all honesty. While I am prepared for it and have had my suspicions for a while now, hearing it from the medics has spooked me a little.
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Re: They think it's MS

Postby gillshutt » Wed Oct 28, 2009 8:09 am

They keep thinking I have MS and it never is... I've had 3 MRI's so far (am waiting for the results of the last one) So it may not be, it could be FM which isn't much better :roll: At least if you find out it is MS then you can get treatment to help and it's not life threatening.

FM does mimic MS with lots of neuro symptoms... hence it being thought to be a CNS disorder now.

I hope, whatever the results, you get some help for all the pain etc you are in and come out of the flare soon :hugs:
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Re: They think it's MS

Postby shazq » Wed Oct 28, 2009 10:42 am

Hi

Hope you get some answers soon.
Its horrid waiting around for results. Sorry to hear you have got worse.
Hope you feel better soon. :hugs:
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Re: They think it's MS

Postby Elsbeth » Wed Oct 28, 2009 12:29 pm

I'm a touch confused about the non life threatening comment..
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Re: They think it's MS

Postby gillshutt » Wed Oct 28, 2009 12:40 pm

Multiple Sclerosis isn't going to kill you. People with MS who die do so from related illnesses such as pneumonia. MS can cause other things to happen such as pneumonia, choking due to problems swallowing etc.. Technically the number of people who die of MS is zero.

If your MS is under control and you have made adequate adjustments then you can live a long and productive life. You hear scare stories in the press but you don't hear about the millions of people who just get on with it and live to a ripe old age.
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Re: They think it's MS

Postby LinzWorld » Wed Oct 28, 2009 1:00 pm

MS is pretty serious (saying that no-one dies of MS is like saying no-one dies of AIDS), but there is quite a bit that can be done for it these days. I would recommend checking out the MS Society and seeing if there's a local branch - the one near me does amazing work.
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Re: They think it's MS

Postby DerekJ » Wed Oct 28, 2009 3:29 pm

I would not worry about whether it's MS or FMS, both are very poorly understood illnesses (as both affect the nervous system and have very similar symptoms they are probably closely related) and both can be devastating or quite mild, and the treatments for both are equally ineffective. You will find that people continually change their medications for MS just as they do for FMS.

There is, however, a big advantage to having an MS diagnosis: people will more readily accept that you are ill once you mention MS. But as far as worrying about what the future holds, whether it's one or the other it really doesn't make a lot of difference.
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Re: They think it's MS

Postby gillshutt » Wed Oct 28, 2009 6:46 pm

LinzWorld wrote:MS is pretty serious .


Not necessarily, it depends on the type and severity of MS, much like FM it varies widely. I have a friend who has had MS most of her life, she's a retired vet and lives alone quite happily, still drives and has a happy and near normal life.

Most people who find out they have MS are scared but the majority of people I know suffer in much the same way as the people with FM, you get good days and bad days and flares and sometimes the flare leaves you worse off than before and sometimes it doesn't.

Not everyone gets problems with swallowing or breathing or with bladder problems which are the main things which can go seriously wrong. The majority of MS sufferers live a normal life span. Comparing it to AIDS is a bit over the top in scaremongering. IMO.
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Re: They think it's MS

Postby Elsbeth » Wed Oct 28, 2009 10:51 pm

OK, the reason I was confused was coz I never even mentioned thinking I would die so I wondered where that comment came from.

It doesn't matter to me if it is or it isn't, i just want to know in all honesty. As derek said the only upside is that more people are aware of what MS actually is.
I have a best friend with MS so I kind of know a fair bit about what to expect anyway as they think I have the same type as she does so it has helped having someone I can chat to about it.

While I know people with MS manage quite well, I am already having problems with my bladder.. I get the hesitation aspect of it which is piggin painful. I am finding simple tasks hard now and my OH is looking to stay home with me now as I have very poor balance and keep falling over.

We'll see I guess.
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Re: They think it's MS

Postby gillshutt » Thu Oct 29, 2009 8:34 am

OH Right :shock: It was a saying type thing not an implication that you were worried.. as in 'It's not going to kill you' :roll: sorry for the mix up :lol: It's difficult to convey meaning in written words :roll: :hugs:

Usually they put it down to relapsing remitting because of the nature of fibro with bad days and good.

Here's hoping both our MRI's come back ok but if not at least we won't have to worry about claiming DLA and gp's will listen when we tell them stuff :lol:
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Re: They think it's MS

Postby Elsbeth » Thu Oct 29, 2009 9:27 am

Don't fret, it's quite easy to confuse me in all fairness.

Fingers crossed that we both hear soon either way.
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