A little under a year ago, part of my face went numb, so off I went for an MRI. The neurologist said it was a lipoma pressing against a nerve next to brain stem that was causing the numbness and that incidentally they had found evidence of past inflammation in different parts of my brain. Then I was scheduled in for another MRI, this time with contrast, six months later. That MRI was in April and results were at the beginning of May, which brings me here today…
In the results appointment she showed me my scans, the lipoma was the same and benign, but remember that inflammation? Then she showed me a different slide and pointed out two new areas, and one all lit up and bright with the contrast. She talked through a few symptoms, that I can’t read books as I used to and keep forgetting things short term and getting dizzy spells, then she said “Do you know what MS is?” and honestly from there it’s a blank. When it comes to fight or flight I freeze. She discharged me from her clinic and said she referred me to the MS Clinic.
That was a month ago and I’m now just in a kind of daze because I don’t know what’s happening and I haven’t heard anything since. I completely froze in the appointment, just smiled and nodded until it was over then cried in an art gallery until I stopped shaking.
I feel lost and scared and I don’t know what’s happening and I don’t know what to do. I don’t know anything about MS and I’m scared to look it up because Dr Google is no one’s friend, but I don’t know what happens now. Do I have MS? Am I being referred for more tests? Will there be more needles? I have a horrendous phobia of needles and 3/4 of my contrast mri was spent helping me recover from the panic attack and fainting.
Limboland is the worst time with any Neurological complaint. You know something’s wrong in your body but no learned person will, or in their defence can give it a name.
Take a look around https://www.mstrust.org.uk/search/diagnosing%20ms unless there is a dispute to what you suffer from; there is no need to have a spinal tap; the only other test that uses a needle.
I assume that the person who talked you through your MRI scans was a neurologist. As she asked you if you knew what MS is and then referred you to a MS Clinic then I gather that she told you that you have MS.
If you’d like to know what said during the appointment why not write to her and ask for a letter with the details you were too shocked to take in at the time. I don’t think that’s an unreasonable thing to ask.
You’re in the right place here. There are loads of sensitive, kindly people, like George, who just love to help out, because we were all in your place one and know what it’s like.
It would be a good idea to find out what type of MS you have because that will effect the medication they can give you. And, like George, says it’s not likely that you’ll need any injections at the moment.
So stick with us and we’ll do our best to help you out and give you support (and a whole new bunch of friends).
I can imagine you heard the words multiple sclerosis and from that moment on, your brain just went ‘Blah blah MS, help, blah blah, MS!!’ Nothing else would have been retained because of the shock of it.
Presumably, that neurologist wasn’t an MS specialist, so it’s perhaps a good thing that you’ve been referred to the MS clinic. As well as a neurologist who can prescribe you with disease modifying drugs (aka DMDs), there will be an MS nurse service, and believe me, they can be worth their weight in precious stones.
What you could do, as Anthony suggests is to write to the neuro for info on what you missed from that appointment (my neurologist always does is to write to my GP after every appointment and I get copied into that, but it can take some time to arrive) or you can phone his/her secretary and ask who you’ve been referred to. Check that the referral has been made and see if there’s someone you can speak to about when you’ll get an appointment to discuss further.
When you do get your next appointment, try to take someone with you who can be relied upon to act as an external hard drive for you, i.e. someone who can be relied upon to remember what’s said.
And come back to us her for more info, advice on where to go for help with symptoms and anything else that crosses your mind. We will always try to help.
[quote=“Ssssue”]
What you could do, as Anthony suggests is to write to the neuro for info on what you missed from that appointment (my neurologist always does is to write to my GP after every appointment and I get copied into that, but it can take some time to arrive) or you can phone his/her secretary and ask who you’ve been referred to. Check that the referral has been made and see if there’s someone you can speak to about when you’ll get an appointment to discuss further. [/quote]
In the middle of all the good advice from Sue and Anthony, this is perhaps the best.
Do it now!
Thank you everyone - I got my letter from the neurologist that first saw me and all it says is that there are two new lesions and one active on contrast and that I’m being discharged into the MS Clinic. It now six weeks and nothing from the MS Clinic, so I’m calling today to chase it up. I just wish there wasn’t so much waiting.
So I called to chase - and the neurologist’s secretary was unavailable.
The person standing in for them took a look and said she would re-send any correspondence, but that there was just one letter confirming that I was being referred to the MS Clinic and no further notes or appointments. She didn’t seem to know much or understand what I was asking, so I’ve sent a letter off to the neurologist asking for some clarification about what was said and what will happen (thanks Geoff, Sue, and Andrew, it’s not something I would have thought to do).
But now I just don’t know what to do or where to go from here and how much longer I’ll be waiting. And the waiting is so awful and honestly is making me feel 100 times worse than any possible symptoms. Should I contact my GP? I always ask for them to be copied in to any letters, but can they do anything at this point?
I’m so glad for this space, because right now I don’t know how to approach it to actually talk to anyone about it. It makes me feel a wee bit better to be able to get some of it out of my system.