Hi to everyone,
New user here…I would love to get some advice/get heard on what’s been happening for me since January this year. I’m a 47year old healthcare professional, who has had weird bonkers symptoms for years which I self diagnosed as the start of peri-menopause. Looking back the most significant was almost a year of bladder symptoms, nocturia that could be up to ten times a night, i’m sure you know the type of thing. I’ve always had a lot of pain in my legs and feet but given the physical nature of my job I’ve again put it down to the work, and varicose veins! I also had episodic vertigo and 2 years ago was diagnosed with early onset hearing loss, for which I was given hearing aids. I understand that is likely unrelated to ms though. In 2015 I had a period of incredibly painful swallowing on one side - it was unlike anything i’d ever had through illness and actually reminded me of when I had tonsils removed aged 11. I had a laryngoscopy for this and nothing sinister was found but a biopsy showed elevated white cells.
A couple of years ago I had a mark on my back seen by a dermatologist. It was nothing sinister though I’d explained that I felt a stabbing, burning pain in that area. It was unlike anything i’d ever had before. Months later, when i reached up to scratch my back, there was a massive patch of numbness. I sat on it for a while (a long while actually), until I felt another numb part on the other side of my spine but same level. This took me to the g.p. and thankfully he immediately referred me to Neurology.
I was actually discharged immediately from the consultant as my physical neuro obs were unremarkable. He did however say I should have a brain and spine MRI to be thorough. He sent on a discharge letter to the g.p. and oddly enough the end of it said “she thinks she has MS” (which I found a bit odd really to pass comment on but there you go).
I had the MRI 3 months later and was very shocked to find out it wasn’t normal at all. It showed 1 x 8mm lesion in the right corona radiata and a further smaller lesion. On his report he has written that it may represent CNS inflammation - demylination. There is also a change to the left frontal lobe though it is unsure if that is a vessel.
He actually contacted me to talk about these results because I think he wasn’t at all expecting to see anything based on my neuro obs. He said that they don’t look like a tumour or stroke and feels that perhaps there has been “one definate episode”. But he kind of didn’t really say “you may have MS” even though he has said in his letter that he’s discussed the potential of it…perhaps he has I don’t know. The spinal cord was absolutely fine no lesions at all.
He has decided to get an Opthalmology work up and he has ordered a Lumbar Puncture.
My questions are- is the Lumbar puncture just confirming a diagnosis which he already has decided (reading his letter) that I have? He did explain to me he is looking for Oligoclonal banding.
Another question is - my bloods have ruled out Lyme, Lupus and Rheumatoid arthritis. However they showed that the calcium and white cells were off.
It is also worth mentioning that I’ve now been signed off work for 4 weeks. I have the most incredible pain in my legs and feet that doesn’t get better with rest - as well as toes that keep cramping up. I’ve had pins and needles in both hands and just crashing fatigue. This all came on quite suddenly around 9 days ago - i’ve been working through the lockdown and have felt normal really. But the leg and foot pain in unmanageable.
If you’ve got this far in my post I salute you! Sorry for the bombardment of information. Right now I’m in a limbo state of waiting for an LP which frankly I can’t see coming for over 6 months.