@Arwel

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Arwel

Confused about MS diagnosis

I am going through the process of "being diagnosed" at the moment and all indications are that it is MS, but the whole process has sparked a question amoungst hundreds of other questions that I am unable to rationalise. Maybe someone can help me answer one question. Today I am not diagnosed, tomorrow I might be, what actually changes. I'm sorry if I sound flippant and I do because I don't understand the significance of being diagnosed. I have my third Neuro appointment to go over lumber puncture results and do evoked potentials in a few weeks, but I am getting a little confused and uptight as the label of being diagnosed seems to be a major milestone and I don't get it. This site is a wonderful place for support and the empathy that is shown is wonderful. I am one of those "older" young people, but I keep being drawn back to shift.ms.

sazjh

@sazjh

I was 'officially diagnosed' around 15 years ago (I'm now 38). After the initial shock, soul searching, convinced that that would be the end of me............I can honestly say nothing has changed. OK, I have a 'label' and it causes confusion sometimes for example, do I disclose at job interviews or keep quiet, do I tell new people (I don't usually), but all in all I've found it is a label that is there which I sometimes think about if I'm having a bad day. My day to day life hasn't changed, I haven't seen a doctor about it in over 10 years, I don't have an MS nurse or a neuro etc. I had an MRI scan etc over 15 years ago, it happened, I got a label, I now just get on with things. I appreciate I've been lucky but that's my experience. I do sometimes wonder whether being 'labelled' is actually helpful myself. x

clearmri

@clearmri

I too an in the process of being dx. To me an official Dx would mean that I am not going mad, not a hypocondriact. I should get access to an MS nurse, who would be my first port of call, if I suspected anything nuerologicaly wrong. I might be able to access LDN or DMD's, which could mean a better brighter future for me and my family.

mostlysuperfluous

@mostlysuperfluous

Gettin dx was scary for me, i was a bit of a wreck for a while which i suppose is to be expected. There are a few things that that i liked about getting the dx. The not being a hypercondriact thing was nice. 'Im not really weird, i just have MS, lots of young people have that too' Having a catagory for the NHS to deal with me in is really helpful too. 'i have a weak leg and my eyesight goes a bit funny sometimes and i get really tired easily' was really annoying for me for years cos no one would understand and i was bounced around every ward at the hospital for problems i had. As soon as i got this title people could kind of understand what to do with me, possibly treatment and stuff. There's stuff like shift.MS too. I know you dont have to have MS to be a member but theres definately some support in just knowing there are others going through the same deal.

Stumbler

@Stumbler

There will be little difference in you pre and post-diagnosis. But, post-diagnosis, your irritation will be identified and be given a name. Once you know your enemy, you can find out more about them. Discover their strengths and weakness. What makes them tick and what stops them. A name gives you the opportunity to commence this research in earnest. It will bode you well in your personal management of the condition.

Arwel

@Arwel

Well it happened today, diagnosed and nothing really changed. Work tomorrow, pick up kids from school..................same old same old, may it last like this for a long time. Be well everyone.

VixR

@VixR

I was diagnosed 2 months ago, and for me it was a relief after alot of uncertainty. Although, as you say, it is just a label and you are the same as the day before, it means that there is a reason behind everything you are going through. Now that I know I have MS I can find out how to deal with it. Good luck!

kraheera

@kraheera

My dx gave me a huge sense of relief. It wasn't just me overexaggerating things. It wasn't all in my head. When people told me I just needed to try harder, and I was already trying as hard as I could... I can look back and say "THIS was what I meant. I literally could not pull that off." It gives me a reason to not beat myself up about being forgetful. I have a reason for being forgetful, so when it happens, I shrug and fix the problem, moving on without needing to feel guilty about forgetting something. I am able to reach out to my daughter's school and let them know my issues, so that they can help me make sure that I'm the parent she needs to get her through her school career. The teacher actually sends me an email everyday listing what her assignments are, since I can't read my daughter's handwriting anymore. (she's only in 2nd grade, so it's still pretty bad). When we lived in Idaho, the city actually sent a bus to pick her up, because driving for me was getting dangerous. We lived inside the mile limit, but it was just under. And I didn't trust the area enough to let her walk that far on her own, neither could I manage that walk at the time. No fuss. I just had to give them my doctor's number so they could verify I was a patient. NOT knowing what was wrong was the worst. Thinking that I was a hypochondriac because everyone said that I just had to try harder, that I wasn't as sick as I thought, that I just needed more exercise... it was a mental killer. My self esteem was in the tubes. Now? Now I can look people in the eye and tell them to go pound sand, because they don't know what i deal with. I bike an average of 8 miles a week, 3 days of yoga, and long walks twice a day with the family dog. I cook, light housecleaning, homework with the daughter, and play with my 3 year old. I teach my 3 year old how to speak, because he's behind. My days are full, and I work harder than most healthy people I know. I can keep my chin up now, because I have a name for what i have, and hypochondria is NOT it.

kerrylousie

@kerrylousie

I dont think of the 'label' as a bad thing. It tookd over my thoughts completely before being diagnosed, once that came it was such a relief and am now able to get on with it even though for the last few weeks i have had that many different symptons its unbelievable.

iFiona

@iFiona

Having the diagnosis 23 years ago didn't help me greatly as I then expected to know the prognosis of this MS thing. I now realise nobody know what is going to happen with this disease. Especially not people with it. Am not sure how I'll feel from day to day or which physical difficulties I'll have each day. But I know now that most people will make things as easy for you as they can and some will go out of their way to make things even more difficult. But the important thing is to keep your chin up and not let others drag you down.

Chris75

@Chris75

Wow <a href='https://shift.ms/community/people/Chels/' rel='nofollow'>@Chels</a> You really made your point there. I was saying yes, you're right, the whole time I was reading. I've not been diagnosed 2 months yet, but been living with it for almost 2 years, the whole giving it a name/label was a big bridge to cross for me, I kept saying to people ''whatever it ends up being, I'm living with it every day!'' Just as a side note, people have been alot more willing to believe when I say that something is a struggle for me. So I suppose it's validated me a bit. (oddly)

Aoife

@Aoife

Your diagnosis is the first tool you get to help you. Officially saying that you do have MS will be beneficial to you. Chels explained very well the benefits of it, she's right. I can see how you might think it's a label, but it's really not. Having a diagnosis means you can do something about it, it puts you into a better position. You just need to change this idea of the label, remember that you may have MS but MS does not have you. Dealing with diagnosis is different for everyone, but being officially diagnosed will work in your favour :)

DanRB80

@DanRB80

My dx was fine I could finally know what was wrong and it helps at work and with blue badge etc to be dx rather than in limbo as it feels like. getting dx is like a door opening to something else-not different but something else if you see :s