Last reply 11 months ago
Finally formaly diagnosed

I received a copy of the letter that went to my gp from my most recent neurology appt that finally diagnosed RRMS, after 4 months (and 3 years) it actually feels a huge relief to have a formal diagnosis. I can stop saying ‘i probably have’ and start moving forward with managing what I now know I have. I’ve been experiencing a relapse now for 4 months, with visual problems (nystagmus, ocillopsia and double vision in left horizontal gaze), extreme fatigue, tremor, poor balance, cognitive and speech problems, weakness and sensory symptoms including l’hermittes sign. So I was given high dose methylprednisolone 500mg for 5 days and I have never felt so unwell! Palpitations,insomnia, tremors became so bad they affected my jaw, feelings of disassociation and black mood. I stopped after three days due to the extreme side effects, I’ve started to feel a little better now. My next steps are that I’ve been referred to specialist MS services fairly nearby where I can discuss DMDs in depth (when I get an appointment!) and I see my neuro again in another couple of weeks.

Im still signed off work so I’ve got to go to occy health and try and fight for some reasonable adjustments for when I’m well enough to go back. Right now I don’t even know what I’d be able to do effectively in such a high risk/high energy environment (I work on labour ward as the senior sister in charge ) so I’m scared about losing my career and getting sidelined into some tedious desk job. Still I will have to work something out as I’ve only got another 2 months of full payment before I drop to half pay which I cannot afford. Here’s hoping the steroids continue to work and this relapse truly does one soon and buggers off!!
If I get offered it I’m hoping to try lemtrada but am yet to have that discussion. Everything just suddenly seems so difficult…
Anyway, thats my update, I feel like a fully fledged member of the club now, limboland truly sucks and I’m glad to be out of it! Xx

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11 months ago

@loutoodlelou , I’m not sure whether to congratulate you on obtaining full membership to our club or not. It seems so wrong, but so right! 😉

I do hope the Steroids do their job and help you recover from this relapse. Visual problems have a very adverse impact on your quality if life.

Now’s the time to sit down and relax. Research the DMT situation and build your case for Lemtrada, if that’s what you want. It does seem the most effective treatment available. Don’t allow yourself to be fobbed off with less effective treatments, waiting for further damage to accrue before you’re allowed what you want.

And, whilst you have your feet up, call the DVLA and your car insurance company and let them know of your diagnosis.

Let’s hope you can get back to the ward soon.

11 months ago

@loutoodlelou sorry to hear that the diagnosis took so long – for my wife the timespan from first signs to diagnosis was 5 months, which reading around seems to be a record.

Hope the steroids keep on working and the side effects wear off soon.

11 months ago

Up @lootoodleloo, at least you know now. And great that you still have some entitled cover to make sure you recover fully. Hopefully this period of pre-DMD and recovery will be a one-off. At least you’re working in a profession that should fully support you. You will be OK, write this off as the worst ever year and focus on the onward continuing journey. Wishing you love and recovery x

11 months ago

Hi @loutoodlelou

I also work for the NHS. This site is my support and comfort blanket. I don’t post a lot but It’s so comforting to know we are not alone in our journey.
Please take your time with recovery from your relapse and as everyone has said do your research. Another pearl of wisdom, I learnt from here was not to make any rash decisions! (I learnt the hard way).
You are still you! mum, wife and an amazing midwife!
I am really struggling with fatigue but I love nursing so much, I often go home with very little energy left in the battery for my family. I’m trying really hard to adjust things to make it more balanced. You will find your way and the NHS will support you in your journey. Use your occupational health, union, citizens advice or anything else to help with your return and any adjustments you may need.
I’ve sent a friend request if you need to ask anything else.
Take care

11 months ago

Thank you all xxx

11 months ago


Well at least you now have a definitive answer to your health issues.
So, I wish you well and good luck with the Treatment choices you take.

All the best.

11 months ago

Congratulations on being a official chronic MSdebator.

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