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One year on...not yet diagnosed

This time last year I was told I had two lesions on my brain and that MS was a possibility. I’ve had what I would consider nominal symptoms and my last follow up MRI showed no change, which I find promising. But I also find myself apprehensive of being too relaxed / happy because the research suggests MS is still very much a possibility, esp with lesions present.

I’ve recent started seeing a therapist to help me cope with the not knowing and various other issues. This time last year I was ready for my life to change…as it turns out, not much had changed and I am still in limbo land…next scan is booked for March…

I hope 2019 brings me some answers…because this living between knowing something could be wrong and hoping all is ok is very confusing and challenging.

Wishing good health to all for the new year.

Aw, I can’t believe it when user names I know well, like yours come up and I realise how long a year it’s been for you.

I’m really sorry you’re living in the mire of limbo. I hope you get some answers soon. And that your therapy is helping.

Sue

I completely empathise! I have 3 brain lesions and only one mild episode of optic neuritis (back in Sept 2017) so I was until recently in limbo land for over a year. The ‘watch and wait’ scenario started to grate after a while ( as I’m a fairly proactive person) and when my LP came back postitive I pushed for a full diagnosis. My neurologist was a bit reluctant and wanted to keep me as CiS but as anything else had been ruled out so she finally agreed. It made such a difference to me to formally diagnosed now. When I was CIS I found it hard to understand the situation I was in and it was difficult to explain to others what it all means. It could be that I’ve had over. A year to come to terms with MS but I feel that since formal diagnosis I have relaxed a bit more. Also, I’ve now been given access t some drugs! Whoop! Due to start Tecfidera shortly. Have you had a LP done?

I am in no position to allow me to comment on speeding up the diagnosis period.

However, I do feel since I’ve been having various problems since 1999 and only received a diagnosis just prior to Christmas 2018, I may be able to make some comments of what not to do in hind sight

Don’t give up and just accept things, I had periods where I felt fine and convinced myself it was just a bug.

Try to see more than 1 Doctor, I’m not doubting their training or their professionalism in general, but all people vary. I was told after I lost sight in my left eye for a while (which never fully returned) that it was just a bug and I will soon be over it. It was only years later a couple of other Dr’s suggested there may be more to it than just a bug.

When I got to the point of not being able to walk reliably, and suffering pretty much constant pains did I get to see a GP who was able to work through things and refer me to Neurology.

Try to keep the pressure up on the progress, it helps if you have the support of friends on family as well. It can be a difficult journey, and it appears its not a straightforward path.

Finally, just to clarify my comments, I have no medical training.

Best wishes.

My neuro did suggest I could have an LP but suggested better to wait for repeat results first. I might push for one this time around though if it means I might get some answers, or some comfort If it came back negative. I find my neuro quite hard to get hold of and my gp seems useless.

Was experiencing awful pain behind my eye for about 6 weeks and some vision issues, but Gp said since my recent mri didn’t show anything new it was probably nothing - migraine likely, which funnily is what I was told was likely when I was first referred to neuro for possible tia…hmmm…a week later told I had two lesions and ms possible. So sorry if I am a bit skeptical…ha!

anyway, I carry on…not always calm, but hanging in there! I’d like to hear how you’re getting on after diagnosis. Have you started the tecfidera yet?

It certainly has been a long year and yet somehow a whole year has passed. Next scan in March. Might see if I can push for an LP this time around. This forum has been a huge help this past year though. Nice to know I’m not alone :slight_smile:

Saw my neuro on Monday - am being booked in for another mri. Think some of the issues I had at the end f the year may have been optic neuritis which could suggest new lesion(s). He suggested it felt we were heading towards a diagnosis with my existing lesions and prior ‘symptoms ’. I really still don’t know how to feel about all this - for the most part, denial seems to work :frowning:

Hi

Your neurologist likes MRIs I have only had two, one was for my stomach (gallbladder) second for my head which found one legion. He did tell me that he wanted me to have another one, as I haven’t had a spine and head one still waiting. I have had my lumber puncture and blood test, I have an appointment with the neurologist in April, but it was my double vision that started it all. It’s been about a year, with my vision.

This week I was carrying a box down some stairs at work and nearly lost my balance, it really frightened me, I am so wobbly when i go up and down stairs with out holding onto the banister.

Have you asked your neurologist for a LP i thought it was one of the tools for discounting MS, it must be very frustrating to keep having test after test but no more information at the end. I know it is for me, roll on April but I wish I knew for sure what I have, it’s the not knowing part that the worsed thing about this.

If I was you I would change your GP if you are not happy with him. I am sorry to hear that you maybe heading for diagnosis of MS. If you do at least you know where you are and that you can get help which at the moment you can’t. Limbo sucks. My neurologist spoke about MS three times and was puzzled that I didn’t have more symptoms, I didn’t know what he was looking for and had not told him anything. (It never came up). I hope it all goes well for you.

Kay

To be honest, I feel that you are heading towards diagnosis. I understand completely that denial is a useful (?) method of dealing with limbo. But won’t be of so much use in the case of actual diagnosis (should that actually happen).

Try for anger, frustration, disappointment and foot stamping while shouting ‘it’s not bloody fair!’

Then start planning on which disease modifying drug you’ll start.

Don’t feel like you have to bear it in good humour, with acceptance and upbeat positivity.

And just remember we’ll still be here to moan and wail with you.

Sue