Forum

21 and in limbo - uncertain future??

Hi there,

I’m new on this forum although have been browsing for a while. I had an episode of double vision in May which cleared up after about 8 weeks. I was rushed for an emergency MRI which showed localised inflammation but thankfully not my biggest fear which was a brain tumour! I was so relieved that although MS had been mentioned I hadn’t given it a huge amount of thought and my neuro/opthalmologist had reassured me it was unlikely due to the lack of other symptoms and no family history. I then had evoked potentials tests (all normal) followed by a lumbar puncture which has revealed othe presence of oglioclonal banding in my CSF. It was of course a bit of a shock to be told by the neurologist that there is a high chance that this is MS. However, as I have only had one episode and no other symptoms I don’t meet the criteria for a formal diagnosis.

The neuro has told me that it could be years, if ever, before I experience another episode. Or it could also happen next week. The unpredictability of this disease is what is scaring me the most. I feel like my future is so uncertain, I don’t know what to expect or how to feel or what to say to people. The fact that I feel completely well and have no symptoms makes it even harder in a weird way!

I know noone can tell me what is going to happen or when, but I am thankful for a place to vent my feelings to people who I know will truly understand!

Hello Robeean

I’m a few months down the line from where you are so I hope this helps. I’m really glad you feel fine, that’s great and hopefully it will stay that way. I was 34 and had Optic Neuritis - totally lost sight in one eye (no concept of light) but sight has recovered well. Like you had emergency MRI which showed lesions and was given a high chance of MS. Similarly to you I couldn’t be diagnosed because of the one occurrence. So it was a limbo and waiting game.

6 months later my same eye went again, but I didn’t lose the sight this time. Still no diagnosis as it was in the same place, but went for evoked potential tests which again confirmed what was needed. That was in Feb this year. I felt really well throughout and have so far not felt ill at all (apart from the scary first day I went to A&E losing my sight!!). Go forward to June this year and I had symptoms in my hands and legs. Saw my neuro and he did physical tests on my legs, feet and hips and gave formal MS diagnosis then.

That was in July. I’m awaiting treatment now but feel pretty good in the main and it’s not for me been a difficult process so far, so while I know full well what limbo is like, I really hope that you get the results you need but feel really well too. Hopefully you will do for a long time but do let me know how you get on.

All the best

Sam

Hi Robeean,

Look on the brighter side (yeah, honestly).
You have not been diagnosed with MS, so you don’t have to tell the DVLA and have all the fun of three-year driving licences.
You should look into life insurance that has critical illness cover - paying particular attention to the requirements for disclosing pre-existing conditions.
You should go and do whatever you want while you still can. Run a marathon, visit Australia or the US, learn to paint, whatever. One day, it may be too late, and you will say “if only …”.

Don’t let the unpredictability scare you, make it work for you.

Geoff

1 Like