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Matty

Any success stories?

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Matty

Hi,

 

Recently joined as in Limbo.

 

What im looking to find out if its ok is :- Do you have a dx that is NOT MS?

 

Im interested to find out if people have found some light at the end of the tunnel! Folk that have thought they had MS but another dx was made and the person is happy with that and is now being medicated for it etc.

 

Are these forums the excpetion to general MS in the UK are most people in the situation where they have issue then are given a dx of MS and thats it, done and dusted.

 

Now i know there will be a few people that joined the site originally then have found out the dont have MS so maybe have dissapeared but id hope a few stuck around after making friends!

 

So in short can any tell me they were in limbo, have since been given a solid dx but its NOT MS??

 

Cheers!!

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Heste

MS is not that easy to dx which is why we have so many people in limbo.

 

It is also possible to be given a solid dx of MS only to have the docs change their mind at a later date. It's because of this difficulty that Neuro's can be hesitant to DX.

I also think they are hesitant to dx because the MS label is quite heavy but many like me are more relieved than burdened by it.

 

I was fortunate in that my MRI was clearly showing MS that matched by symptoms and history, but even then I was called "probable MS" for a month or so. I was also fortunate in that my Neuro specialises in MS.

 

You are right in that we do have people who call themselves frauds when it turns out they don't have MS and despite our reassurances that its OK to stay they drift away. We do have some who are still here and who I am sure will reply later.

 

Regards,

 

John :cowboy:

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davidtaylor603

First even if you do ultimately get a diagnosis for MS then there is still a small possibility that you do not have MS. This is because MS is the clinical opinion of a neurologist based on test results and case history, there is no absolute test for MS.

 

Whether you call being diagnosed with something else light at the end of the tunnel I guess depends what you are diagnosed with and your opinion of that problem.

 

The only light at the tunnel my wife ever found was discovering and trying with success LDN.

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Matty

Wow was expecting more happy endings!

 

:cowboy: lol

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Michelle

Hi Matty,

 

I was diagnosed with MS and then had this revoked. The MS specialist who i saw in order to be prescribed drugs, decided that I might be suffering from a vascular disorder - the tests that he subseqently ordered all came back clear.

 

I do however have other dx's;- growth near spinal cord,raynaurds disease, CFS,tia's Does this make me happy? No! My happy ending would be to be healthy - I'm not! so I make happiness a day to day occurrence.

 

I chose to stay with this forum as it's friendly and down to earth.

 

 

Regards

 

 

Michelle

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Matty

Thanks Michelle :cowboy:

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Christina

Hi Matty

 

It's also possible to have lots of other diagnoses before finally being given the MS one!! So many neuro conditions seem to overlap.

 

Chris x


Not waiting for the storm to pass, but learning to dance in the rain ....

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Matty
Hi Matty

 

It's also possible to have lots of other diagnoses before finally being given the MS one!! So many neuro conditions seem to overlap.

 

Chris x

 

Yip understand but im looking for thoses whom at the present time have be dx with something else other MS. I know that may change in the future.

 

Anyway by the looks of the replies it is not alot!

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linds

We have 1 member that I am aware of. I hope they see your post and may answer. Linds


Lindsx

 

 

 

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happyandy

Hi Matty,

 

I would think the chances of false positives are low if you fulfill the McDonald criteria for MS which is regarded as the gold standard of MS diagnosis.

 

http://en.wikipedia.org/wiki/McDonald_criteria (OK, I know its WIKIPEDIA, fountain of all inaccuracies ! )

 

The demographics of new members of the forum or similar types of forums would probably fall into these categories in no particular order

 

1. With a positive dx

2. Partners of someone with a dx

3. People with the symptoms of an ilness who have a dud doctor or Neurologist

4. Those awaiting DX through Neurological examination

5. People who now have a negative dx through Neurological examination but with symptoms that mimicked MS

6. People diagnosed with MS who have had the dx changed.

7. People who Google there symptoms

 

As Michelle intimated, finding out that you don't have MS is not automatically good news. The light at the end of the tunnel may be an oncoming train .....

 

Cheers

 

Andy


If I knew I was going to live so long I would have taken better care of my body

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Oops

Hi Matty. I'm another who has got MS, but I just wanted to point something out, here. At risk of seeming a tad harsh, whilst an MS dx is something of a shock, IT ISN'T THE END OF THE WORLD!!!

 

A few things to ponder:

 

On the subject of people without diagnoses:

1. Most people drift away if they get the all clear or another diagnosis, simply because the whole testing thing was a stressful time in their lives and they'd therefore rather forget about it.

2. If they get told they have another condition, they naturally gravitate towards a specialist forum for that condition.

3. If they get told nothing is wrong, they tend to feel like frauds hanging about.

4. Sadly, most who get told they have ME or CFS seem to think they are being fobbed off and go into a cycle of disbelief. I say sadly, because those/that condition/s is/are (shouldn't have started this singular/plural thing...LOL!) are every bit as serious and real as MS, but even those who are diagnosed with them seem intent on perpetuating the misinformation in the general population surrounding them. But that is another soapbox, and far too many long words for a Friday. The point is, with rare and wonderful exceptions (*waves at Mich*) you won't find them here.

 

All of these factors mean that you cannot sensibly extrapolate from your findings as a result of this post. :crazy:

 

On the subject of medical forums in general:

1. People don't tend to post unless they have something specific to say.

2. When they do have something to say, it's generally something that the "real" people in their lives wouldn't understand.

3. That means it's the bad stuff.

4. Which means that the view you will get of the condition is inevitably very heavily biased towards the negative.

 

Remember that when you read. :cowboy:

 

As for the disease itself? Let me use myself as a case study:

1. I have Primary Progressive MS. It is supposed to be the "end of the world" variety, but I think it's more like the "lazy person's" variety. I don't have to fanny about relapsing and remitting all over the shop, and as there's no disease modifying treatment, I don't have to bugger about with that either.

2. I'm 33 years old. I first got a "Possible MS" dx 4 years ago. They reckon at that point that I'd already had the disease 10 years. Now, I'm sorry, but any disease that you can have for 10 years and not notice ain't all that dramatic, right?

3. My MS has hit my legs first, and therefore I am a prime candidate for being in a wheelchair at some point. However, I do loads of physio, take plenty of therapeutic meds, and am still going strong. And I don't fear the future. For the vast majority of people, regardless of what brand of MS they have, the actual disability progression is really slow, and you just kind of adapt without really thinking about it. The more "dreaded" adaptations have been, for me at least, a blessed relief. And most people with MS NEVER end up in a wheelchair, so why worry until it happens, especially when you know that the day it does you can tell yourself it'll be a good thing?

4. You won't necessarily end up on the sick. I work fulltime, away Monday through Friday, doing 65-ish hours a week. Ok, so to do that I have to go steady on stuff at weekends, and can't do many things I used to, but I've found other interests instead.

5. As an example of what I mean by "other interests", I'm involved in canine rescue - homechecking, assessing and bringing in dogs, and fostering dogs in our home. It's just a matter of pacing. Oh, and these aren't little toy things. I work with Great Danes.

6. Transport won't necessarily be an issue, either. Just because you have MS doesn't mean you'll be driving an adapted car, or being driven, in 5 minutes flat. That job I mentioned? I'm an HGV driver. I drive a 44 tonner on long distance work. I have to renew my licence once a year, but otherwise all is fine. I do a less physical type of haulage these days, but that's the only real difference. It's just small adjustments making the world of difference, again. I've just had my licence approved again for the next 12 months, as it goes. You have to be SERIOUSLY screwed before they'll even THINK about having a car licence off you.

7. I have 2 kids, 4 and 7. They accept that Mum can't do some things other Mums do, no problem at all. Kids are far more accepting and adaptable than adults. We should follow their lead, really.

 

I could go on like this all day, but you get the jist. PLEASE give yourself a break from the panic thing. Life really is what you make of it, whatever the label. :dunno:


Apologies in advance if I post then vanish for a bit - I work away from home and will be back at the weekend!!!

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Heste

Jolly well said Oops :cowboy:

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linds

I would like to second that


Lindsx

 

 

 

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angela

And from me also, I'm a sp electric wheelchair user and have a great life living on my own!

 

Angela :cowboy:


Give a woman the right shoes and she can conquer the world! Bette Midler.

 

 

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Loopy

Thank you from someone who has been a bit of a worry wart recently, you really have made a lot of sense.

 

:cowboy:

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Lindyloo

Thanks Opps/Lucy

 

Your post is truly inspiring... nice to see you popping in..

 

I agree u do get used to it and adapt and enjoy the good days...

 

Love Lindy...xxxx I have MS 9 years and not bad at all.... could be worse eh??


LindyLoo xx

" This moment will pass " (Bono U2)

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Panda

Hi Matty.

 

I've not got MS & i'm still here, i look in on the posts most days but don't post as often as i did. This is the best forum ever, I don't know how I would have got through this with out them. :chat:

 

I had a clear mri & lp and was referred to a rheumatologist.

 

Apparantly I have severe vitamin d deficiency & connective tissue disease, probable behcet's syndrome & possible sjorens syndrome. The she mentioned it could be lupus but need to have more tests. I could also have calcium deficiency which could be causing my joint symptoms & I also could have a problem with my liver. I can start medication but need to have tests before as they have many side effects & they don't kick in for 3/4 months. My chest xray was clear so at least my lungs are ok at the moment - does that make me a success story? :question2:

 

I hope everyone gets some answers soon, we unfortunately need to be patient patients. Then hopefully we will get the correct diagnosis - thats if they don't change their minds of course :goodluck:

 

Clare x :rofl:

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Sleepy
Scully

OOps.

 

Your post is just fabulous! PPMS is NOT the end of the world, it took me a few monhts, and a couple of false starts, initially, to come to terms.

 

BUT, I do treasure every day, even the 'not so good ones' coz it will pass, and, if it dosen't, then I'll deal with that....IF and when if happens.

 

I no longer torture myself, with the 'what if's' and 'but maybe's'

 

Well, what a tonic we all had for this post !

 

Well done you!

 

Scully

x


They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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Oops

Phew! With hindsight I did wonder if I'd made that sound too much like giving Matty a bollocking without really saying anything useful :goodluck::rofl: .... So I'm glad you guys enjoyed! :question2:


Apologies in advance if I post then vanish for a bit - I work away from home and will be back at the weekend!!!

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Dianni

You are an amazing bunch of people you know!

 

Yep, we all have crap days and times, but I don't think I have ever come across such a large number of people who are consistently positive, available, caring, intuitive, insightful and willing to share!

 

:rofl:

 

Hope all this helps Matty.

 

Hang around with us. Most of us a re slightly mad, but hey, we have to stick together :question2:

 

Hugs

Di

xxxx

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Bernadette

When the docs were still trying to work out what was up with me, they said it might be a brain tumour or it might be MS. I was glad it was MS given that choice.

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heather

i havent been diagnosed with ms . im still here i love this forum the people are so friendly im still seeing people and everything seems like a long trail i had a clear mrion the brain ut havent had any other tests as of yet .. today seems a hard day im struggling to walk the legs are very weak but hey il try and just get on with it take care xxx

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Michelle
Yip understand but im looking for thoses whom at the present time have be dx with something else other MS. I know that may change in the future.

 

Anyway by the looks of the replies it is not alot!

 

I only know of one person that has been diagnosed with something else,and she's still an important member of the forum. A lot of us Matty have found new friendships via this forum...what we have in common is being human and having an illness of some discription. I hope whatever happens you will always find this forum a place where you can find support during the dx process.

 

Regards

 

Michelle :rofl:

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heather

whatever illness i may have i still suffer in the very similar ways tierdness numb achy legs tremmers feeling very week burning of the feet mostly at night . its good to be able to talk to others about it all .

thanks to the great people on this forum it makes me feel stronger whatever diagnosis i get it isnt going to change much apart from i would have a name for it .. take care all .. xxxxxxxxxxxxxxxxxxxxxx

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Matty

Thanks everyone - i hope you all understand all i was trying to do was see my % chance etc.

 

The replies have been excellent and whatever happpens im sure ill stick around!

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