Hi, I would just like a few words of advice please.
I was diagnosed with probable MS last April. MRI showed lesions on my brain and my spine. They are not looking for anything else, just waiting for the second shoe to drop (relapse). My symptoms were numbness from the waist down, with everything else that goes with the numbness (vibrating, tight muscles, pins and needles and so on), plus dizziness and numbness in my face and head.
All these got much better and I had 17 weeks symptom free. Then in the second week of December I had a bad dizzy spell that lasted for hours, and then I had other dizzy spells all over Christmas. I now have numbness in my face and forehead, the numbness on my forehead feels like I have a head band round my forehead. My lower lip and right side of my tongue are numb (my tongue feels like I have burned it, but I haven’t).
Is it worth phoning a MS nurse, I have there number but I have never phoned before. I don’t think it is worth it and I would just ride it out however long it takes, but my husband says maybe they can do something for me, thought I don’t think so.
I think that you should see your MS Nurse. The symptons you describe could all be associated withMS, but equally they could be associated with a number of other conditions. I wish you well.
I think you should phone your nurse. It’ll do no harm to speak to her maybe put your mind at ease. If associated with ms you may be able to get Iv steroids to help Take care L x
I’m not sure they will “do anything” - you may be offered steroids, but I’m not sure, in the case of a “non-disabling” relapse.
However, it’s worth getting it on the books that it has happened, as it may be the “second shoe”, as you call it, that enables you to get a diagnosis.
I know an MS diagnosis is not something anybody wants, but you’ve been living under the shadow of “probable” for quite some time, and knew you were only waiting for a second episode. If you can get this one medically verified, you’re there!
A confirmed diagnosis may open up some treatment options for you, as you appear to have had the requisite two relapses in two years. It also could prove important if you have critical illness insurance, as MS is usually on the list of covered conditions, but you can’t claim until diagnosed!
So worth checking any policies.
Usually you only have a short time (mine was three months) from diagnosis to initiate your claim, so worth digging out the paperwork in advance, before you even get that far. Then you will be able to act quickly, if it’s confirmed you have MS.
'm pleased to hear you have got an appointment to see the MS nurse as you need to cite all forms of relapses especially if you are to get officially diagnosed. Also if you are considering DMDs you need to get these types ofepisodes logged into the system as the NICE guidelines state you have to have so many relapses within a year period to even be considered for these.