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Marina

[SURVEY] What Difference Does Having A Dx Make?

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mayb

That was nice of you to say Mich. Thank you too and you are more than welcome - the one thing we all need is to be understood and not everyone has someone at home to do that - I have been lucky in that respect as my OH is always there for me, but it made a big difference finding a doctor who was willing to be human too. I also see a psychologist at the pain clinic and I cannot say how much she has helped me through this last year of changes and acceptance of difficult facts. I will need her for a little while yet but can see the day will come when I wont and that is good too.


Mayb

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lisalisa

Thank you so much Mary.

 

One of the things that is helping me the most is popping on here and seeing kind, understanding words from people who dont even know me but care enough to reassure someone else going through what they have.

 

I think that is one of the most valuable things that we can all have, knowing your not alone, that your not the only person this is happening to.

 

Being able to ask a question about a wierd symptom that others wouldnt understand but on here you will find someone who understands and says yes that happens to me, and somehow that makes it easier... it validates your problem.

 

Being able to have a rant if your frustrated and being understood, instead of feeling like your whinging again.

 

Being able to laugh about whats happening if you want to.

 

Not being judged.

 

Being inspired by others courage but given support if you dont have enough courage yourself.

 

Feeling like you belong.

 

I browsed this site from when my symptoms first started but never registered cos i thought i dont know if its for me...ive never been a forum/ chatroom kinda gal, always figured i had plenty of friends in real world so i didnt need any on internet. How wrong could i have been !!

 

So thank you Mary and thank you to everyone else who has given me good advice, support and made me smile. :hearts_circle:

Lisa x

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mayb

One of the things I quickly discovered Lisa, is that this condition we have is isolating, even from your loved ones at times. If you broke your leg and it took a long time to mend, you and others can see what the problem is and relate to it. This is often an invisible and rather strange disorder which only those of us who have experienced it can begin to relate to and understand totally how you feel both about it and symptom wise. Like you I found this to be the only place I felt really understood and supported - next you move on a bit and start offering some of that same support to other people. You may find you don't need it so much after a while as you begin to adjust and find acceptance of your changed life: there were days I spent when only chatting on here and reading about the experiences of others kept me sane and kept me company when I felt so alone, despite a loving and sympathetic family - they couldn't be where I was at that time.

 

I hope you stay with the forum as you have a way with words and I am sure many people will relate to your post and see themselves reflected in it and maybe other 'watchers' will feel able to join in too.


Mayb

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Crappy
Marina

Mary, lovely to see you again, you've been much missed on the forum! And I echo every word Michelle has said :hearts_circle:

 

This topic was not intended as a discussion but as a "poll" of individual experiences on the difference having a DX may or may not make. Thank you for adding your very wise, beautifully worded and valuable contribution to it, as it gives insight into the aspect of being in Limboland for so very long as opposed to having a DX.

 

Lisa, as Mary said, I hope you stay with us for the reasons Mary mentioned and we look forward to your posts elsewhere on the forum :wink2:


Marina

(belated DX in June '05, SPMS)

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madderbat

This thread is fascinating and it's wonderful to hear so many people's experiences, makes me feel less alone on this wobbly path of life.

 

For me having a diagnosis has left with with an enormous sense of relief.

 

My own journey, via what were thought to be tia's and menopause (!) meant that when I had a huge relapse two years ago I really didn't know what had hit me. The myriad tests, x-rays, and an encounter with an absolutely horrible consultant neurologist left me wondering if I was going mad.

 

To finally have it acknowledged that there is something happening in my system which neither I nor the medical profession can control has resulted in a much kinder gp, referral to an MS nurse, neuropsychologist, physiotherapist and incontinence clinic (which I've put on hold for now).

 

Even the receptionists and the secretary at my surgery are kinder these days and it really helps a lot. I don't understand why they had to be so 'rule-bound' obnoxious before, but that's another matter.

 

I gave up work after two tia's 8 years ago and my son and husband have gradually got used to me not being up to much sometimes and not able to do everything I used to. Initially we all approached it with the attitude 'Well, I've been ill, but now I'm better and can get back into the swing of things and get on with life.'

 

I finally understand that isn't the case. It's been a learning curve for us all and I am so grateful that we all finally understand more thanks to some of the literature on the MS Trust site. I still feel a bit guilty about not doing much, but I've learned that if I do too much it leads to exhaustion and I suffer next day.

 

Having a diagnosis has given me permission to spend time day-dreaming and not fretting about getting off the hamster wheel of modern life.


Never make the same mistake twice. There are so many new ones you can try a new one every day ;)

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Crappy
Marina

Summer and Andy, I hope you won't mind but I've split and moved your two last posts into a new topic here: http://ms-people.com/forum/index.php?showtopic=9838, as they were veering away from the dedicated subject of this topic being for single posts from people describing what having a DX may or may not mean to them.


Marina

(belated DX in June '05, SPMS)

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Summer
Summer and Andy, I hope you won't mind but I've split and moved your two last posts into a new topic here: http://ms-people.com/forum/index.php?showtopic=9838, as they were veering away from the dedicated subject of this topic being for single posts from people describing what having a DX may or may not mean to them.

 

I don't mind at all, it is sometimes difficult to decide if one should start a new thread especially if it is related to another one : )

 

I think having a diagnosis helps sometimes. I had to get a dx for something else a couple of years ago and I wasn't happy until I got it then.


Edited by Summer

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Suzanne016

[Two posts by Suzanne merged into one as this topic is intended for single posts :-)]

 

A dx would make a big difference to me, even though my symptoms would be the same a label would help me accept them. I'm hopefully on the verge of getting one and I think it will be like having a big weight lifted off my shoulders.

Another reason is I will be able to ask questions about my prognosis they might not be able to give me definite prognosis as everyone is different but they might be able to give me some guidelines.

I feel a dx will make people take my symptoms more seriously and put my mind at rest.

 

I feel a diagnosis is really important because I'm in a wheelchair everybody insists of asking me what is wrong with me and when I say I don't know I get strange looks or annoying comments. If I had a diagnosis I would have more of an idea of a prognosis even though everyone is different so everyone's prognosis isn't the same. I also spend so much time reading about different conditions that could have caused my illness ( ppms looking the most likely) it would save me all the trouble.

 

Also I need adaptations on the house but my disability officer is reluctant to spend any money onme because I have no diagnosis, she says I could be walking again in a few months if that was only so but my physio has said the chances of me walking are near enough zero, she's give up on the physio due to no improvement but rapid deterioration, so she referred me for an electric wheelchair (its been a godsend). If I got a diagnosis she would have to agree to adaptations. Its ironic though because I got highest rate DLA care and mobility for 5 years which they don't just give willy nilly.

 

I just feel a diagnosis would put my mind at rest and help me accept my condition better.


Edited by Marina
Merging posts

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Skylark

I'm still in Limboland. My first neuro diagnosed me with FND and CFS, but the second has told me not to try and put a label on my various MS-like neuroligical symptoms and instead think of it like a 'software problem'.

 

Meanwhile, my gut instinct is shouting 'It's MS!!!' so I have a conflict between inner knowing and others' observation. My MRI was 'within normal limits' and I'm awaiting a VEP test.

 

If I'm diagnosed with MS, it will be a challenging blow but will reinforce my sense of trust in myself and my intuition.

 

If MS is ruled out, the possibility of getting better will open up but my self-esteem and trust in my instincts will be crushed.

 

I just want to know what I'm dealing with. Either way, I face a challenge but this not-knowing is harder.

 

I see myself getting slowly worse (I now use a stick, wheelchair or mobility scooter depending on circumstances) not to mention all the other issues. The waiting is occasionally torturous. However, I'm grateful to have got a place on a CFS/ ME rehab course...the help is like water in a desert.

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Nick

Well a 'diagnosis' is simply a broad label. The trouble is it's a bit of a double edged sword. With a diagnosis you simply have a name to give your problem, but that is all. It's what happens next that is more important. It's certainly not a cure, nor should it be one of those labels that condemns you, or others, of thinking of yourself, in a different way. There lies the danger. Whatever your situation you should always aim to live in the best way you can, this applies to any body, good health or bad.

The 'good side' is that with a better understanding of the problem (the diagnosis) you can start working towards maximising the use that knowledge gives you.

Being in the dark and not having a definite path to follow, is very difficult. However excluding the possibilities of what it is NOT, is good. So it's good that you are pleased to be going on a Rehab course. That can only be a positive move, one more piece in the Jigsaw.


Edited by Nick
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Just another Warrior...........

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Deleted

To me, a diagnosis would at least provide answers. It's entirely possible I don't have MS - it could be any number of things, some worse, some better, so at least a diagnosis would give me some idea what was going on and enable me to start planning for anything that I may or may not need to do to adapt to whatever it might be that I've got. It would also make it possible to see if there are any treatment options I could consider that might make things easier and help with pain issues.

 

It's no fun to be stuck in limbo, not really knowing whats going on, how you'll feel tomorrow and if you'll be able to go do anything, or justbe stuck at home again for another day. It would also provide those around me with some answers. It's hard when people ask whats wrong and you have to tell them you simply don't know. At least a name for it would be something people could find out more about and maybe understand better.....

 

Most of all tho, I just want to know!

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Nick

This shows that you are thinking in a positive way, just when you don't really feel like being positive..........a good sign. Limbo-land does have an end.

Answers do come and things do resolve themselves. Some of those things may not be what we want to hear, it may make differences to our lives, but things do move on.

 

Nick


Just another Warrior...........

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Crappy
Marina

A friendly reminder :flowerface:

 

This topic is a "survey" which means it's not intended for discussion or replies to previous posts. The idea is to post once, saying why a DX might make a difference.

 

If anybody feels they'd like to start a discussion about what they've posted here, please start a new topic rather than continuing here.

 

Thanks.


Marina

(belated DX in June '05, SPMS)

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