@ScarletDamsel 

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ScarletDamsel

Now What?!

I'm still going through all the diagnosis, so I don't know which form of MS I have just yet. I have had quite a whirlwind of 2 weeks, I went to the Dr's complaining of numbness and tingling in my right leg, completely expecting him to say I've over done it mowing the lawn and to take some painkillers and all will be fine. Instead, he sent me to the hospital suspecting I had 'saddle anaethesia' and needed an urgent mri. After doing the usual 'dr google' searches while sitting in the waiting room, I thought that diagnosis, if it was to happen was bad enough. After going through a few questions and checks with the Dr's, they told me I was having an MRI on my brain, not my spine. I couldn't understand why, until they got the initial results and told me there were changes in the white matter in my brain, and I needed another MRI this time with the dye and of my spine. My discharge notes said 'demyelination, MS most likely'. I had the 2nd MRI scan 3 days later, whilst I was waiting the 3 days for the scan, I received an appointment to see a neurosurgeon at my local specialist centre (QE Birmingham). I know things can't be good if this appointment had already been booked before my 2nd MRI. I had the 2nd scan, I was in the machine for 1hr 20mins, I then waited for my results, in which they told me it's definitely a form of MS and I needed to begin a course of IV steroids immediately, but first a lumbar puncture. So within a week I went from a numb leg and thinking I had over done the garden, thinking I had a nerve pinched in my spine, to being told I have MS. I think I preferred the prognosis of being diagnosed with the pinched nerve and needing surgery for that. I have had the lumbar puncture, and the 5 days of IV steroids, I now have covid, thanks to the low immune system, I'm getting through it though, just lack of sleep currently, hence why I'm on here at 5am! The lumbar puncture results were 'not good' whatever that means, but I guess I will find out at my appointment at the QE on Wednesday. I am focusing on getting better from covid by then. I am in complete shock (grief?!) By all this, how quickly things have escalated, but I should be grateful how quickly they have moved with everything, which also terrifies me as to how bad things actually are. I'm a single mom of 3, although my eldest is 19, my youngest who is 7 is autistic. Like the title of this post, now what?! I don't know how to process this or where to go from here. Sorry about the long rambling post. Regards Debi
@Clary

Hi @scarlet. It sounds like you are going through a lot of medical investigations, and facing an MS diagnosis is truly scary. Having children who depend on you adds extra responsibility and concerns for yourself and them. I would definitely recommend mustering support for you, whether that’s family or friends. I also accessed counselling with an MS charity. This helped me at a really difficult time. On the MS society/ YouTube there are some videos with puppets which explain what MS is for young children. These were useful for my kids. Wishing you all the best.

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@SalBee82

Yup same as above, next- meds and try to take it day by day