Hello lovelies
Well still no diagnosis and learning to live in limbo land while under investigation. So far I’ve had a brain MRI that returned as normal by ophthalmology and a subsequent referral to a very thorough neurologist who sent me for a full spinal MRI 4 weeks ago. Can’t fault the care but goodness me it feels like it’s taking forever to get some answers (since October) and that’s where I’m trying to learn patience and how to distract myself! I am feeling very fortunate tho as a friend my age has just been diagnosed with a brain tumour, very serious, urgent and scary for her so I’m relieved they didn’t find that. I also don’t have Diabetes, Syphillis, Aids or Lyme disease- or a lot of blood left but whats left has plenty of folate and b12 so we’re eliminating stuff bit by bit.
A lot of the awful pain and spasms have disappeared from my left leg and I just have ongoing historic pain in my lower spine/pelvis now which is all managed. Weirdly tho since that all stopped I’ve developed a very odd feeling toe on my right foot that feels like it’s getting a bit left behind when I’m taking a step, or the sensation that something is stuck under it plus tingling and fizzing and it sits too far away from the big toe now as well so all very strange. I don’t have any serious presenting symptoms except for a second bout of Optic Neuritis in February and I’ve now lost some colour and brightness in that eye. I guess I’m hoping they do find something wrong now then at least I’ll finally have some answers but reading through past posts it’s looking like it could take up to a year or more. I feel a bit like a fraud to say I have MS cos there’s no demyelination evidence yet and it might just be a trapped nerve in my back.
Is it okay to talk to the MS helpline do you think, even if you’re only under investigation? I wonder how many people with tingletoes and optic neuritis get diagnosed with someone else….and what!
I think talking to the MS helpline is absolutely appropriate if you want to do it. I don’t think there’s a rule saying that they only listen to people with MS, and I’m pretty sure that they’re very aware of how horrible it is in limbo land.
It’s definitely a test of one’s patience! But the thoroughness sounds bloody good.
Fingers crossed you’ll get some news sooner rather than later. Good luck 
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