Hi - new to all this
recently had a CIS diagnosis with a referral to MS specialist team to establish whether further tests are required. Started 2+ years ago with tingling in both hands which persists to this day. Had an episode of left side numbness just before christmas last year, following MRI spine scan this led to the CSI diagnosis. Being referred for nerve conduction tests and further referral to specialist team. Have been prescribed Gabapentin for nerve pain. Feel like my life is on hold, constant round of tests and waiting for letters to drop through the door, I know its a long road but i’m not the most patient person. On here to speak to others who know what i’m talking about and feeling right now
Hello
It seems that for some people you are unlucky enough to have a very long road to diagnosis.
It may be that the MS specialist will refer you for a further MRI and/or Lumbar Puncture and/or Visual Evoked Potentials tests.
This will at least give them an idea about whether you are more or less likely to convert to MS. And if the decision is that you are likely to change diagnosis from CIS to MS, you might (should be) given the opportunity to start taking a basic level disease modifying drug (DMD).
Taking a DMD is the best way to delay conversion to MS. Have a look at Clinically isolated syndrome (CIS) | MS Trust It should give you more information about your current diagnosis and further tests.
You are welcome to the forum. I know it’s a place you’d rather not be entitled to join. Any questions or thoughts you have, or indeed and fears, worries, wobbles, feel free to post on here. Your fellow limbo dwellers as well as those of us who have more experience to offer will do our best to help.
Sue
Thanks for your reply Ssssue, my neuro did mention at my last consult about Lumbar puncture but he said specialists would decide. I can’t fault the care received but everything seems to take such a long time. My partner and sister have been fantastic but others who don’t really understand always seem to say ‘but you look really well’ or ‘if it was urgent you would have been sorted by now’. They just don’t get it, its good to be in a place where other people have some idea of how i’m feeling. Thanks again and I will check the link out.
Hello Alberito
If anyone has the cheek to say ‘if it were urgent, etc’, I would tell them, ‘you try living with my symptoms and then tell yourself that’! Or more likely ‘bullocks (or a similar word), what do you know?’
I hope you get a final diagnosis soon. And continue to receive the same level of care.
Sue
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Hello. I’m in exactly the same boat. CIS diagnosis and been told I will have another MRI in 6 months. Was not offered any drugs to delay conversion despite lesions on the first MRI. 6 months feels like a long time to wait when you’re suffering with symptoms. Be reassured we know what you’re going through and it’s tough. Welcome to the group. Hope you get the next appointment through quickly. Xx
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Hi, welcome!
I’m also in limbo land so of course can identify to a point with how you are feeling. It does seem to be a long road, having said that I guess it’s not really one any neuro would want to misdiagnose!
I don’t really have much to add other than to empathise with you as a fellow newbie … may I ask which part of the country you’re in? It’s interesting to see how diagnosis procedures vary from place to place. I’m in Staffs so under N Staffs University Hospital which does seem to be fairly ‘with it’ - as a teaching hospital should be I suppose!
Hi Minnie Mouse
good to hear from a fellow newbie - im in Manchester and under Salford Royal who I have to say that although a long process, which I understand, the care I have received so far has been second to none. Was being seen in a general neuro clinic have now been referred to specialist clinic - just waiting on this appointment. For Manchester people Salford Royal seems the place to be.