@Loutoodlelou 

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Loutoodlelou

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
@Stumbler

@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! :wink: 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.

@Seb80

@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.