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Nervous

I have an appointment with my Neurologist today.It is the first since I have had my brain and cervical MRI where ‘areas of high signal’ were found and my lumbar puncture was subsequently arranged because of this.

I am just scared that he will say there is nothing wrong and that it is all in my head and send me away-especially as I am feeling a lot better at the moment (typical!) and find it hard to put into words how I ‘was’ feeling,

I feel like i might end up today back at the beginning which to me is a bigger fear than any diagnosis might be! My husband although incredibly supportive doesn’t get it. He thinks that it will be brilliant if the doctor says I am fine and on one level he is right. but surely that would mean the problem is ‘me’ and I have imagined my symptoms?

Sorry for the negativity…just think some of you will understand how I feel today in a way that nobody in the ‘non limboland’ can!!!

Hi Belle

It’s probably a bit late to say this, but yes, it’s perfectly understandable that somehow you’d almost prefer the answer to be MS, because at least then you’d have an answer rather than be flung back into the pool of despair that is limbo, or uncertainty.

So if your appointment is now over, let us know what the result is and if you can bear to, how you feel about the result.

I can imagine that whichever way the appointment went, the feelings will somehow be similar, both relief and worry regardless of the result.

I hope you’re doing OK.

Sue

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Thinking of you Belle. I can relate to that feeling too - haven’t had my MRI results yet (though neuro secretary going to e-mail him to look at them) but it’s a weird thing wondering what’s next if nothing shows up! I’m already on B12 injections and suspect will get ME/CFS if MRI clear (the possibility has been mentioned).

I hope your appointment was helpful and informative.

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Thank you both for your kind responses.

Well it looks like I will be staying around for a while yet as I have today been given a diagnosis of MS {Relapsing Remitting)

The consultant showed me my MRI and I have multiple lesions and my lumbar puncture was positive for oligoclonal bands.He is going to make me an appointment with an MS nurse and has told me to start researching DMD’s in readiness.

At the moment I feel strange,I feel so relieved to know that I am not a hypochondriac (I have wondered a few times) but I know that despite having suspected this for some time that it really hasn’t sunk in yet, It may yet hit me like a ton of bricks!

I am going for a night away shopping with my 12 year old tomorrow. On a whim a few days ago I upgraded to a swanky 5 star hotel…It felt a bit indulgent at the time but now I am so glad as I feel like I really deserve it. I am not telling my daughter until I have spoken to the nurse but I will be able to really spoil us both regardless!

I am going to give it some time to sink in. In essence nothing has changed.

Hi Belle

Well I’m glad that you’re not a hypochondriac, and that your time in limbo has ended, but I’m also sad for you that you’ve officially joined our gang!

When you’re ready to, here a useful tool for looking at the various DMD options: https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid

Don’t forget that alongside relief, you are almost certain to have an emotional reaction towards getting the diagnosis. It may not hit you in the next few days, but we almost all have days (or weeks or months) when we feel low and downright p*ssed off about MS.

When you need people to understand, we will be here.

And meanwhile enjoy your day of spoiling with your daughter.

Sue

hi belle

oh don’t know what to say, glad you’ve got answers but sorry you’ve got ms.

i’ve had some very good times (usually lubricated with gin!) and some utterly miserable times.

but as long as their is gin in the world we’ll be alright.

have a good time with your daughter and enjoy your posh hotel.

carole x

Thanks Sue.

It does feel a little surreal at the moment. I am not sure how I feel to be honest but I am no worse off today than I was yesterday and at least now I know what it is I can start doing something about it! On that note thanks for the ‘DMD link’ (although I have been hanging around here for while now I have held off from reading about the treatments so far) I feel I am heading for a steep learning curve.

It is really comforting to know that there are people on here to guide and help me. Thank you.

I have told my husband I am taking the credit card shopping and I’m not afraid to use it!!!

Ah Carole,

a woman after my own heart. I believe that Gin will probably factor quite heavily in my journey also!

There are just so many new ones to try. I had a little test of a Quince one this evening…medicinal of course…it was rather nice!

Thank you for your support x

hi again

you’re right, gin is bang on trend and there is such a massive choice.

i recommend fevertree tonic because it’s lovely.

carole x

Yes Carole, I was introduced to Fever Tree recently and love it. I can see we have more than MS in common lol!!!

xxx