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Is it normal to feel so disconnected?

Hello everyone!

I just wanted to thank everyone that posts on here - the support and advice here is truly inspirational.

My recent Brain MRI showed lots of areas of inflammation which the neurologist said may be causing my symptoms although my spinal MRI was clear. I am down for a lumbar puncture in the new year and presume there will be some confirmation of diagnosis after that point.

For the last few weeks I have been rather unwell with a really bad flare-up of symptoms (symptoms I have been dealing with daily for many, many years!) and the neurologist prescribed a 5 day oral course of steroids to help. My lovely specialist did actually say this would be MS and that is why we were going this route.

So........ I am sitting here, when I should be at work(!) battling the tail end of the effects of the steroids. I have been reading the posts on the forum and am amazed and in awe of you all - planning, researching and adapting! So why don't I feel anything about this?

In my head - I am the same person with the same health issues as before- after so many years like this, a name for my condition really does not amount to much. I have been living this way for years and do not see how or why anything will change now. The only thing I can think of is " I knew I wasn't a hypochondriac" and "Basilar Migranes HA"!! Am I being naive? Believe it or not, I am more worried about not being worried than I am about the lumbar puncture, and the possibility I'm going to implode or something when everything does finally catch up with me. 

Sorry for the ramble and not sure what anyone can say to it, but it was really good to admit this in writing! It's the first time I have "spoken" to anyone other than the specialist about it and the first time I have used the letters MS in regards to myself.

Lisa

 

I have MS

Hello Lisa

When you say ‘battling the tail end of the effects of the steroids’, you’re not kidding. Steroids can really play havoc with your brain. 

But, I don’t think it’s unusual to be rather distant from oneself at the end of a potential diagnosis. The feelings of ‘at least now I’m proven not to be a hypochondriac’ etc, are fairly common. Sometimes an MS diagnosis is a positive thing. At least you have an answer. 

That doesn’t mean that post LP you won’t crash and start getting angry. We go through all kinds of rollercoaster emotions following a diagnosis. And feeling furious, frustrated and downright pissed off is also normal. 

And of course you are right that you’re still the same person you were. Nothing changes, even though some of the words change. And you never know, you might get a really good disease modifying drug and nothing much really will change for you. 

Don't forget that many of us have had MS for a long time. 22 years for me. That’s a long time to get to know the ins and outs of the tricky devil that is MS. So we may come over as having done a load of research, making changes to our lives and adapting. It takes a long time to understand even as much as I know, which is really a tiny amount of what there is to know. I’m learning new things about MS all the time. 

But you are right, this forum is full of knowledgeable supportive people. We do our best to support each other. 

Sue

Thank you :)

 

You have enough on your plate without worrying about whether you're worrying enough.

Whatever you are feeling or not feeling is fine.   Whatever you are feeling or not feeling is exactly what you need to be doing to deal with things right now.   We have excellent automatic internal systems for dealing with matters relating to self-preservation, these being too important to leave to our wayward conscious minds.  But yes, it is a bit unsettling when those systems swing into action and don't consult us on the matter, so we can't figure out what we are feeling/not feeling or why.  Just go with the flow if you can.  When the dust has settled a bit, things will start making more sense and you will find your way back into the emotional driver's seat. 

Alison

I feel exactly the same I'm awaiting my MRI head/spine and now worrying that if they are clear I will feel more of a hypochondriac than I already feel at present. I feel that the unknown is worse than knowing at present. I feel like in a little world of my own at present.

Stacey

lisa and stacey

whilst you're going through the hell of waiting for a diagnosis, give yourself something to look forward to.

arrange to meet a friend for coffee, wine, beer, gin (depending how much you like a tipple).

you will survive!

Thanks Catwomen ... I think I was a bit miserable yesterday but I have woken with a cold this morning this may be contributing factor and lots of face pain over the weekend .. I have lots of gin and chocolate for Christmas :)