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Marina

[SURVEY] What Difference Does Having A Dx Make?

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Crappy
Marina

MARINA ASKED (via the mailing list):

 

What difference would having a definite dx make to those of you (like me) who are still without a definite dx (as tests etc are still inconclusive etc)?

 

Or, what difference did it make to those of you who have had a definite dx?

 

How does having a dx help (given that there is no cure) and what does it change?

 

To what extent does it matter if one knows for sure or not? If it does matter, what makes it matter?


Marina

(belated DX in June '05, SPMS)

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Crappy
Marina

DEJA REPLIED:

 

The difference it would make is...

 

You know you are not going mad

You know there is a reason behind this

You know there are other people who are facing the same as you

And you feel as though 'you belong' and not out there alone

 

There are people out there who understand and you are not just a mad

hypochondriac

 

And you can put a name to what you are suffering with

 

I always thought they would find out what was wrong with meon

the 'slab' cos nobody was taking any notice of me.... Now they do :-)


Marina

(belated DX in June '05, SPMS)

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Crappy
Marina

FI REPLIED:

 

Just like Deja said it was a relief more than anything and to know I was not going mad! Having a dx has enabled me to go on the beta yeah I know isn't a cure but I haven't relapsed as much as I was before. It mattered very much to me to put a name to all these strange and weird symptoms, they haven't gone away but at least I know why it is happening! Also friends and family I hope understand more when I say I physically cant do something and am not just making excuses.

 

It is reassuring to chat with other people too with the same symptoms and to learn how they cope with things and know you are not alone.


Marina

(belated DX in June '05, SPMS)

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Marina

ELAINE JONES REPLIED:

 

Yes, I spent years and years when i had RR MS knowing that the docs and most of my friends thought of me as a hypochondriac to the extent that even I had started to wonder if i was imagining things. Somewhere deep down i knew something was wrong with me. The big difference would have been that if I had been diagnosed sooner, there were drugs like betainteferon which might have slowed down the progress - too late now that I've moved on to secondary progressive & we would not have moved to a larger house with large garden that I can't even walk to the bottom of now! We would have moved to a flat. The benefit would have been mainly financial but i would have been spared those looks from doctors' receptionists of "here's the hypochondriac again!" Yes, I am somewhat bitter!


Marina

(belated DX in June '05, SPMS)

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Crappy
Marina

CHRIS O REPLIED:

 

Having a definite diagnosis makes 100% difference. Instead of worrying about every single symptom, wondering what is causing it, going to the doctors, being referred to different hospital consultants, I now know what is causing most of the things I get, I can cope better, I do not go to the doctors anywhere near as much as I used to. My hospital notes are thick, but are now staying the same size instead of growing on a monthly basis and I now haven't seen any of the new consultants, but all of the old ones still remain in my notes. I am not looked at when I walk in the surgery with the knowing "here she comes again - I wonder what is wrong this time" look. There is no doubt that when any doc sees the size of your notes, if you have nothing proven wrong with you, then the hypochondriac label comes into operation. You can see it on their faces.

 

When I got my diagnosis, which was unexpected, I knew there was something but did not expect MS, when I got over the initial shock and horror, it was almost a pleasure to go and tell my GP who replied shame facedly "oh well, that explains all your problems then". No apology for making me cry when I asked to be referred for a second opinion and saying "how many opinions do you want, you have been told there is nothing wrong with you".

 

Oh well, coping is one thing but a cure it another. I don't guess it will be in my lifetime but at least I have coping strategies to help me get by, I just wish I could change the understanding others have of this often invisible disease who go on the premise that you look OK, therefore you are - if only.

 

This got a bit long, sorry, but after years of suffering in silence, we have to let rip sometimes!! It leaves a bitter taste of how I was treated before diagnosis as you can probably tell, so the moral of this story is, yes it certainly does help to actually know what is wrong with your body.


Marina

(belated DX in June '05, SPMS)

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Crappy
Marina

ALISON PROCTOR REPLIED:

 

You know I have just been dx with RR/ MS... 26th Febuary this year!

 

For me I desperate to find out WHAT was/is wrong with me. For years I have had 'odd' illnesses, and I KNOW that friends and even family have thought that I was putting in on!! Even the receptionists at the Drs had that 'look' about them too when I walked into the surgery yet again..

 

I KNEW there was something wrong, but I just needed to know what.. Maybe I needed to prove to people that I was ill in the end too!

 

Now that I am dx... Well things ARE different ..

 

I am glad that I finally know what is wrong with me, but.. I hadn't realized just how much it was going to 'upset' me. It is very hard coming to terms with the fact that I have an 'incurable' illness, and that the future is uncertain...(I know nothing is certain in life!!)

 

It is also very hard seeing the people you love the most, looking at me differently.. They feel sorry for me I suppose!!

 

Even the receptionists at my Drs have changed...they are all nice now, and talk to me, instead of just acknowleding me!!

 

I also find that people do not understand what MS is.. They say things like.. You look so well! I am glad you are feeling better! At least you don't have cancer! Oh you can't die from MS, so thats good!

 

I know they mean well, and for the most part they are right..but!!

 

My life has changed, I am soon to learn all about injecting myself, with one of my pet hates...NEEDLES! I am to have regular MRI tests..I HATE the scanner with a passion, as I am alittle claustrophobic (sp)!

 

On the plus side... I have found this fantastic group here, with all of you wonderful people!!

 

I couldn't cope with all of this, if it wasn't for my family, friends Drs.. etc etc.. But I am now finding that I have a whole new branch of friends..here, and at the hospital...my MS nurses and that!!

 

I will cope in the end, it will all fall into place one day. I believe that I have MS for a reason, as yet I don't know why, but something GOOD will come of it. That I am certain!!

 

Thanks for asking this question Marina....

 

You have made me do some thinking!!


Marina

(belated DX in June '05, SPMS)

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Crappy
Marina

DEJA REPLIED:

 

I feel having a name to put to something that is wrong helps to 'fight' it - even if only mentally accepting it... A name helps :-)

 

It certainly makes you feel less of an IT and more of a person


Marina

(belated DX in June '05, SPMS)

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Marina

MEG TAYLOR REPLIED:

 

I can think of two main advantages to a definite diagnosis. The first is psychological -- some people find it easier to deal with a certainty, even a bad one, then not knowing. And the second is practical. If you've got a diagnosis and you meet the criteria you can be considered for disease modifying drugs (beta interferon etc.). You also become eligible for other "perks" -- easier referrals to OTs, free prescriptions etc.


Marina

(belated DX in June '05, SPMS)

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Marina

FIONA REPLIED:

 

Free prescriptions from your GP. I get cos I cant get to the chemist so anyone with mobility probs will be covered and so I can hand my prescription and card to someone else to collect for me. You can get the form to complete at your surgery.


Marina

(belated DX in June '05, SPMS)

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Marina

ELAINE JONES REPLIED:

 

Yes, I agree with Meg 100%. All the things that do make life easier - Blue badge, Taxicard, cheaper theatre tkts, OTs etc etc and of course, DLA come automatically in most cases when you have a definite diagnosis. Life does become easier!


Marina

(belated DX in June '05, SPMS)

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Crappy
Marina

KATIE REPLIED:

 

I definitely think having a diagnosis makes a difference. We have lots of diffrent 'quirky' problemss - and i think it makes a huge difference if you can say (or feel) - i have ms - i often have it in my head as a kind of defence mechanism when i imagine people are looking at me and thinking that i am clumsy, drunk, staggering or whatever. On another level, a strange thing happened to me a couple of weeks ago when i saw an opthalmologist after a referral by my consultant because my vision had deteriorated in the last year. One of my first symptoms 10 years ago was optic neuritis ( ON) in my left eye. I then 'researched' ON and discovered that it was a classic first symptom of MS , and one of my other symptoms at that time was pins and needles in my fingers. I put 2 and 2 together and decided i had ms. 2 years later, after an MRI scan , lumbar puncture and evoked potentials, I was dx. So I have known for roughly 10 years that I have MS. When I saw the eye specialist a couple of weeks ago, he asked about any illnesses I had. I said, I assume you know I have MS, and he said "yes, but I didnt want to mention it in case you hadnt been told". That took me back to my initial consultations with an eye specialist 10 years ago, who told me that they didnt always tell people that they had MS, because of the 'self fulfilling prophecy' which is

ms = wheelchair, i suppose.

 

What all of this says to me is that we need more awareness of ms - because people who dont have ms in their life sometimes think that if you have ms then you will end up in a wheelchair - and that isnt always the way - is it?

 

sorry to ramble, hope this makes sense,


Marina

(belated DX in June '05, SPMS)

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Crappy
Marina

FI REPLIED:

 

Katie - I had optic neurosis as my first symptom and went I went to my local eye casualty clinic they said it mainly happened in young children as I was later told not everyone goes on to develop ms and that's why they didn't want to tell me but now I know that is otherwise. Any way in a way I am glad that for 2 years I lived with no other symptoms and didn't have a clue I had ms, now thinking of it had I had access to the net then I would of done more research and found out more. I do wish the eye problems were written in red across the front of my GP notes though as for months she kept telling me I had a virus! I am glad though really that they never said anything initially to me!


Marina

(belated DX in June '05, SPMS)

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crispy

Hi all, I know this is not the place for introductions, but it fits in quite well with the subject matter.

 

To what extent does it matter if one knows for sure or not? If it does matter, what makes it matter?

 

It has made a huge difference to me, apart from the many reasons already mentioned, there is also one of financial security.

 

I'm Chris, currently 52 and about to be 53. Fifteen years ago, my wife Cathy and I were about to get married and move into a new house that was stretching the finances to the limit. We both decided to take out insurance that included critical illness cover, just to make sure things wouldn't come tumbling down around us :cheers: - this was our dream house, and we didn't want to risk losing it.

 

I designed a new garden that involved moving tons of soil and a lot of hard landscaping. After more than a year of working evenings and weekends, I got my first symptoms, although I had no idea what they were. I'm not a religious person, but I found myself praying to someone - 'Please let me get this finished'. That went on for several months and I did get the job finished. Two years later I had my PPMS diagnosis, and I'd had no idea previously.

 

I went downhill quite quickly mentally, and that mattered in my line of work. I worked for a large company who treated staff very well, and they retired me in my early forties, with the benefits of one who'd worked up until 65. I put in a claim to the insurance company who tried to get out of acceptance. Several months and many letters and tests later, they admitted the claim and all was well.

 

Now, I'm not suggesting anyone try to defraud the insurance companies, but if no tests have proved you have it, and the notes don't make it obvious that you have had an illness, it is the only chance of covering yourself. There is certainly no chance of getting cover once you have the diagnosis.

 

All the best, & keep smiling,

Chris P :wink:


................................ :dog: ........................................

All the best,

Chris P

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ddgorgeous

Ron writing on a more serious not for once,

 

I think a confirmation of what is going on really assists with the person concerned. Not knowing what is happening is a bit scary at times. Once a name is put to it, then investigtion can be done and the curve of learning about it all starts. Not knowing what is happeneing to ones own body is a little disheartening to say the least. A lot of questions of why?, what is happening?, and then what can I expect to happen in the future? come to mind.

 

To educate friends and family is something else, a lot of this depends on the individuals and they can only be 'pushed' in the general direction. If they refuse to accept any of it or educate themselves about it, it makes it a little harder (like MS is not enough to get through on it's own!), but they are probably the main losers through it all. I have noticed a big difference in how some people behave towards me since MS came to light. Some people accept it and my own limitations very well, while others just appear to prefer to shy away from MS and myself. I guess a close death is similar, some people like to almost confront it and accept it, while others will avoid any contact or communication for a long time after the peson has deceased.

 

It is a major learning curve for almost everyone and I for one always thought MS=Wheelchair. It was only after being diagnosed that I started to learn about MS and what the implications might be for the future. A wheelchair is not the correct way of looking at it all. My employers did not receive the news well and I lost two jobs overseas by telling them about it. I can never prove this, but it was quite clear. Since then I have never told any emplyer about MS and kept it all under wraps until this year when I could not work any longer and resigned for personal reasons. It is almost a godsend, as I can now be open about MS, learn more about it, adapt my own life accordingly and make sure I do what its best for me in the long term.

 

There are no gaurantees in life, all we can do is accept what has happened and try to adapt and overcome as best as possible. If others will not accept what is happening, then it has got to be their loss.

 

I am going to get off my soapbox now and stop teaching my granny to suck eggs.

 

Ron


ppms, dx 2001

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supadeja

I also think that when you get a definite dx that people may suddenly come out of the woodwork and think 'oh she isnt mad after all'

 

My MS nurse has helped alot - The MS society are helping me also

 

SO i guess if I still was without a dx I may have just gone mad with wondering why i felt so wierd...

 

And At one point (my lowest) i thought I was gonna die imminently from whatever was wrong with me. And I am glad i didnt do anything stupid (Although i think i am too much of a coward to take the easy way out cos of the phobia)

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petac

Hi All

One of the important things for me was that I had a definite dx and could go onto research what I had and also to be able to give people a reason for my apparent "drunkeness" I felt that I now belong to a "club" and could go to my local MS centre and ask questions. I knew that I wasn't going totally bonkers. It also made a change in how I was treated at the doctors. I always ask for a late morning appt and one kind receptionist said that I should get up early and come in for an earlier appt. When I said I couldn't as I have MS and getting up is really difficult she changed her tune and now says " oh yes you like your usual time wouldn't you" I'm glad that having a definite dx has enabled me to join such forums as this and find people who know what it is really like, not the helpful people who say "I look so well" and "are you sure its MS"

Wish me luck I'm going away with some friends for a hen weekend soon and will be taking my wheelchair, my friends have never seen me use one, but I want to be able to keep up with everyone for a change!! :clapping:

Sorry to ramble!!

Peta


Peta

catzzz.gif

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juliamitchell65

Hi

 

I seem more positive than before. Now i know what it is, i can deal with it.

It was the not knowing that was getting me down.

 

Other people around me seem to have a harder time taking it all in.

I suppose they think the worse and by reading about it, they think that it will confirm their fears.

In reality, they SHOULD read up on it, as i think its the not knowing that makes the fear worse.

 

I have gone through the disbelief, relief and anger part in a very short time.

I hope thats all of it, though maybe parts of all of them will come and go now and again.

 

This is still all fairly new to me as i was only diagnosed after 3 years, 2 weeks ago and i am at the stage on deciding what dmd's to take.

I can say for certain that the interferons are not for me and i would like to go down the LDN route.

 

Its a real relief to be out of limbo land, finally.

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crispy

Hi Julia, :howdy:

 

It's good to hear from you - I think most members can relate to the things you mention, particularly the response of family and friends. I think the comment that 'you look fine', often causes problems.

 

When you feel comfortable in the forum, and are happy that you are among friends, we'd love to hear more about you in the Introduce Youselves section, and if you feel like updating your profile, that would be good too.

 

All the very best, but above all, just keep on smiling, it really is the best medicine,


................................ :dog: ........................................

All the best,

Chris P

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SkattyBell

It would make a huge difference to me just to know that I am not going quietly mad, not suffering from women's problems, and not just depressed and not a hypocondriach and not bone idle. Perhaps other people may take the time to understand a little more about the disease. I have not yet been diagnosed, so it is extremeley important for me find acceptance of my illness personally and to be able to move on.

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Chanco

This is my first post and I smiled wrily at the comment that DLA is automatic. If only it were true. I am sick of jumpring thorugh hoops. I got it on appeal - a horrible experience - and let it lapse because I couldn't handle dealing with the forms at renewal. I kept ringing to say I would do it when I could but they still let it lapse and it is now a new claim which they initially turned down. My MS nurse was great at the last appeal and has done a letter of support this time, so fingers crossed. I work pretty much full time, but work from home lots and manage my fatigue that way. I feel penalised for wanting to get on with my life.

 

Sorry to rant on my first post. I have a pituitary condition and use that forum loads and have made lots of friends, so I am not really a misery guts! Just one of my down times, I guess, but at least I have come looking for this forum, so that is a positive for me.

 

As for the whole DX bit, I was pretty much diagnosed with MS about 8 years ago, but it was based on MRI and anecdotal evidence. When the pituitary tumour was diagnosed (probably up to 10 years after it started to grow!!) it was possible that

all the symptoms were down to that. To be sure, they did a Lumbar Puncture a few months after the pit surgery, but I wasn't sure if I wanted the results. I thought if it wasn't formalised I could think I probably didn't have it, but then again thought it would be nice to hear that I didn't... but that wasn't the case. At least then I thought it was a diagnosis I had more or less lived with for years, so it was good to be able to give it a label. Don't think it affected the way I managed the condition. It's just a case of juggling home and work. (Pathetic excuse to use a cool smilie!!) :shakehead3:

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RedSonja

Relief more than anything else, actually. I had optic neuritis and the headache was killing me, I was convinced I had cancer of some sort. Then it was only MS.

I thought I knew all about MS because my sister has it, and she hobbles round with a stick, Well, that's awful, but at least you don't die of it, I thought. Actually my MS is quite good to me. I am still able to work full time, I can work in the garden in 2-hour spurts, I can still play the clarinet most days.

My neuro offered me medication straight away, which I always take. That way I have the feeling I am able to do something about it.


Bibo ergo sum

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lisalisa
It would make a huge difference to me just to know that I am not going quietly mad, not suffering from women's problems, and not just depressed and not a hypocondriach and not bone idle. Perhaps other people may take the time to understand a little more about the disease. I have not yet been diagnosed, so it is extremeley important for me find acceptance of my illness personally and to be able to move on.

 

 

Ditto from me

Lisa

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linds
Ditto from me

Lisa

 

Well said Lisa


Lindsx

 

 

 

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mayb

Hello Lisa

 

I haven't posted on here for some while as life has taken over for a bit and it was all just too complicated to handle. However, having read your post and had a total deja vu moment over it. I thought I would tell you some of my tale.

 

I had ms type symptoms since about 1992. I went through all the tests in 1994 and was eventually told I may be in the early stages of MS. I carried on my life making adjustments when I had to. I worked full time up until about two years ago when I was sacked (that is another story entirely). I had a couple of nasty sessions when I could not even get off of my bed and stand up and once again went through a long period of tests. Once again no conclusions were reached but many nasties were eliminated. I have a provisional diagnosis for CFS and permanent nerve damage of unknown cause, I am being treated with the same drugs as those given to sufferers of ms.

 

I now attend a pain clinic where I see a specialist consultant and she gave me something to hang on to when I explained just how awful it was to have something with no name and with no diagnosis being looked for anymore. She understood completely and said that because of the NICE guidelines I may never tick enough boxes to get a diagnosis of ms, but reassured me that my symptoms would always be taken seriously and I could be assured of acceptance and understanding from the people at the pain clinic. She reminded me that I had been lucky that no serious enough deterioration had occurred with me for so many years and so could be hopeful that I would not get any worse. They cannot repair the nerve damage but they could address my pain and give me hope of a kind.

 

I am telling you this simply because I recognised myself in your post and none of us know where our journey will take us. However, it is important that we keep the view of life that you have adopted so far and believe in ourselves and don't allow ourselves to feel like hypochondriacs or lazy or whatever else we may think others might label us. It is not easy but any other approach leads to depression and feelings of worthlessness (been there too). Although I am not working and we are a lot poorer for that, I now have time to stop and smell the flowers, as the saying goes. I value my grandchild and my husband and children, my dog and my garden and those friends that have stuck with me through thick and thin and don't need explanations or excuses when I can't do something. I have rediscovered the really important things in life. Funnily enough I also value my health as things could be so much worse.

 

Take good care of yourself and don't beat yourself up anymore and remember that there is always chocolate.

 

:hearts_circle:


Mayb

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Michelle

What a lovely post. I can only echo what you have said...Mary, I am so glad that you have finally found a professional who understands. You have been through so much over the years, and in the past have shared some of the details with us. I personally thank you for that,and am grateful that you have popped in today and shared this with us too.

 

Thank you!

 

 

Michelle x

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