4 weeks ago I thought I had the start of shingles with an itchy, tingly yet numb feeling forehead on the left hand side which then spread down to my ear but finally spread down to my thumb, all on my left hand side. My neck feels sunburnt to the touch along with my scalp and my fringe was irritating my forehead, so much so that I needed to wear a hairband to keep my hair away to stop it irritating me. I have a weak left leg also, I can still walk on it but it’s definitely much weaker than the right leg.
Last Friday I couldn’t drink my morning drink properly and noticed that the left side of my face was drooping and I couldn’t close my eye. I was sent by my GP to A&E and by the end of the day they said I had bells palsy. I asked if this would affect my leg also and he sent me for a CT Scan just in case. This was Monday and then I had an MRI swiftly after. 8 vials of blood were taken on Tuesday morning and I had 2 failed lumbar punctures.
The doctor and consultant seem quite sure I have MS but I’m struggling to accept it. I can’t understand how I’m fine one minute and not the next and suddenly looking at MS websites telling me of all the things that I can potentially expect in the coming years.
I’ve literally just turned 40 and have an 8 month old baby girl and I’m thinking I’ve made a massive mistake having a second child so late on in life and I don’t want my kids to be my carers. Like everyone I’m sure but I’m wondering how this can be happening to me! I’m not ready for a life of medication, or potentially being in a wheelchair but it’s like everyone around me just knows that this is definitely MS! (excuse the ramblings, I just have so much going around in my head but I think you get the gist!).
Dear Anon,
Im so sorry to hear your suffering at the moment, I was Dx last year after a 20 year period of wishing it wasnt MS but never really knowing… When I was 20 I had what I thought was, and was mis-diagnosed as a stroke. I too lost complete use of the left side of my body, face dropped, couldnt swallow or talk properly etc… but I still had some movement in my leg, I spent 6 weeks in a wheelchair and recovered quickly after that period. The MRI then showed one lesion and nothing else, they said it could be MS but they werent sure.
Anyway to cut a long story short, Ive been 20 yrs with small symptoms now and again before i was Dx last year and i spent 20 years fearing it and being scared, like you say… But if i can just give you some hope, dont fear it! I know its hard to accept, im still trying to come to terms with it now as Ive only been Dx for just 6 months, but dont assume the worst, just keep faith and theres lots of support on here, so dont be afraid to ask any questions, as im sure the guys on here will have loads of advice.
Chelle
Thank you Chelle. I suppose it’s the not knowing how bad it’s going to get and how it’s going to affect my liife, will I be able to work, still carry my baby around when she wants, drive, etc, etc, etc.
What treatment have you been receiving? does it need to be treated on an ongoing basis or only when you have “attacks”?
For you the diagnosis sounds like it was a relief.
Here’s the “Primary Diagnosis on Discharge”
MRI brain showed multiple bilateral white matter changes suggestive of demyelination. A formal diagnosis of MS has not been made as we are still awaiting LP results and only one episode has been noted.
Then if this means anything “Significant in-hospital procedures”:
There are multiple, bilateral white matter high signal foci involving the corpus callosum and in a periventricular distribution with involvement of deep and superficial white matter and a focus in the left temporal lobe anteriorly. There is sparing of the brain stem and the cerebellum. There is no evidence of old or new haemorrhage. The features do not appear ischaemic and are most likely related to demyelination.
Hello and welcome 
One of the worst things about MS can be that it suddenly strikes without any warning and completely turns our world upside down. However, the first attack can be very misleading because, not only might it not actually be MS, how things begin do not necessarily relate to how things continue. On top of that, it is quite extraordinary what people can manage to achieve despite symptoms, especially as modern meds, therapy and aids are excellent.
Let me go back to the “might not actually be MS” thing. The diagnostic criteria for MS are dissemination in space and dissemination in time. Dissemination in space means having more than one area of the nervous system affected. Dissemination in time means having more than one attack/episode or having a gradual, long-term, deterioration in the case of progressive MS. The time criterion is arguably more important because there are several different things that can cause a one-off attack that affects multiple areas of the nervous system (e.g. ADEM). This is why your report from hospital states, “only one episode has been noted”. It means that you don’t currently meet the criteria for a diagnosis of MS - because it might not be MS.
As far as treatment for MS goes, there are loads of meds to help symptoms, but there is a relatively small selection to help MS itself and there is no cure. People with relapsing remitting MS can be eligible for DMDs, disease modifying drugs, which help to reduce the frequency and severity of attacks. At the moment, the “first line” DMDs are all injections which are done by ourselves once a week (Avonex), three times a week (Betaferon and Rebif) or daily (Copaxone), depending on what med is chosen. The “second line” DMDs are reserved for people with more aggressive MS and people who haven’t done well on the injectables. One of these is a pill (Gilenya) and the other is a monthly infusion via IV in hospital (Tysabri). There is no current DMD for progressive MS, but there are some in trial so it’s looking promising. More and more drugs are being researched for MS and their efficacy is getting better all the time.
Do try not to worry too much about what the future might hold for now. The first step is to find out for sure what’s going on. And, with any luck, it will be a one-off attack and you will recover well from it. (Fwiw, my son was 2 when I had my first big attack of MS and the nearest he gets to being a carer is running up & down stairs for things for me - which is what any healthy teenager should be doing for his mum!)
Btw, I can tell you what the radiology report says in plain(ish) English if you like - just let me know.
Karen x