So. As some of you know I had a call on Friday from my neurosurgeon. In which he said all my results were in. He said my brain scan was ‘relatively clear’ but that my electrical studies contained a lot of information and that he was referring me to a neurologist as that was what was required. I said what do the electrical studies suggest and I pushed him and he said damage to the upper and lower motor neurones. I said does it look like mnd and he said yes it does. He said to come in and see him to look over results and chat as is already seen him.
so today my partner and I went in.
He showed me my brain scan. I have a big white blob on my right side. My symptoms are my left side. He asked about head injuries. Have I had an accident to my head. I haven’t. I listed possibilities. The attic roof (banged a lot). I fell last year but my chin took the brunt. Etc. He said no. If this was an injury you’d know about it. Unconscious. Paralysis etc it’d be serious. So. It’s not an injury. I asked how old. He said he doesn’t know as he has no previous scans. But it’s not old old. He reckoned 6m to a year. So, if not an injury what I asked if vascular he said he didn’t know - over to the neurologist for that. But he said given where it is he’d have said it was the cause of my symptoms where it not for my electrical studies which clearly indicate damage to both upper and lower neurons and a physical injury wouldn’t do that
It’s v confusing the electricals appear to clearly point to mnd but mnd doesn’t show on scans wtf? What is going on? Is it possible I could have mnd AND another brain disease condition?
Also my right side of brain looks gappy like its atrophied I work in the world of Alzheimer’s and though not a medic of any kind I’ve seen scans of ad brains and that one side of mine does not look healthy I asked him and he totally dismissed it saying the gaps were fine. I just don’t know what to make of anything. he said can I refer you privately as I’d like to not hang around and we are going to try and do this (we don’t have a pot to piss in but need clear answers)
i want to attach a pic of my scan as its on my phone but I don’t know how
Sorry if this sounds off, but have you definitely got Motor Neurone desease then?
Poor you…it is so hard to understand what it all means.
I hope you are coping hun.
Luv
Polly x
The electricals point to that. Damaged upper and lower motor neurons seem quite clear. He said he thinks so. But the neurologist will explain and confirm.
I attached my scan. Not sure why its not showing.
No I didn’t think anyone would or could. It’s just v odd.
Crumbs, what a torrid time you are having. I hope that you get to see the neurologist soon. This must all be just emotionally wrenching for you and your family. Hang on in there.
Alison
hi tillymint
we’ll all be thinking of you.
sending hugs and love by telepathy. (let me know if you receive them)
please keep us updated
carole x
Hi Tilly
Any news on seeing the neurologist yet? Are you going to St George’s? The head of neurology there is VERY good and he likes unusual cases - a bit like House but more polite!
Please keep us in the loop. We are all rooting for you.
Hi.
Thank you for asking
I am seeing a neuro privately first for speed in Wimbledon. But I’ve spoken to my gp
who wants to get my NHS referral underway ASAP. I’m v close to st George’s. Literally 15 mins door to door. But my gp
says though as great as it is at George’s, there is no specialist mnd nurse there, and there is more mnd stuff going on at the national neuro hospital in town. I could get there quite easy now, but let’s face it im going to get more and more disabled and maybe nearness is better. I really don’t know. Neither will ‘save me’. I suppose the thing to consider is research. Trials etc. I really have no idea. And physio etc. How often etc. That’s a consideration. My head hurts just thinking about it.
Hi Tilly Mint,
I tried to download the scan in order to ask around, so if you wish and if you haven’t seen neuro yet, you an send it in private message although the docs i know specialise in ms. How old re u, what re the symptoms?
Be brave and my thoughts are with you,
Sandra
Hi there, thank you for thinking of me. The plot has thickened somewhat. I’ve seen a neurologist privately. He was great. It was v quick referral and he’d not read through my studies yet but did have in the referral let that my results looked like mnd. He gave me a really thorough physical exam. Took ages. Lots of other tests not just reflex hammers. Pins. Single and multiple, deciphering letters written on my palm etc. It showed my issue wasn’t simply motor as there was an interpretation issue too. He couldn’t see fascIilations despite my feeling them and they are on the written report. He said my symptoms were acute and atypical. He wants to do further tests as stuff wasn’t tying up. He called the next day, quite late and said I’ve had a stroke, months ago but it doesn’t seem to account for my symptoms fully. He’s adding cardiac stuff to my list of tests and said to get on asprin ASAP. I’m 44. A stroke?? I’ve never smoked. Not overweight??? Mnd hasn’t been ruled out yet though I feel a sliver of hope. The little seed struggling for life in the bleak dark landscape in The Lorax.
I’m hoping it is just a stroke. ‘Just a stroke’ … my, how my life expectations have dropped… But could it be? My disability is progressing rapidly. Not improving or plateauing. And the upper and lower neurons feeding my arm are damaged not just upper and from what I’ve read strokes only affect one as they are above the anterior horn?
There are big ??? Still. Terminal? Time bomb or both? 2016 is not my (nor many others’ year). But I did have five large breast cysts removed the other week. And I don’t have cancer too so that’s something.
Seeing him again on the NHS this week he’s pushed it along for me
Yes, the world has got strange indeed when ‘just a stroke’ or (for that matter) ‘just MS’ are attractive options. That sounds like a good and productive consultation, though. I hope that this is the start of better news for you.
Alison
What a time you are having of it Tilly. Thinking of you xx
Ok. So I’ve seen my lovely lovely neurologist again today. He said are you feeling happier. I said I think so? Should I be? He said yes definitely. Led me into his office. Showed me my scans. Says no doubt a stroke. Just need to know why. I said are you 100% it’s not mnd. He said can’t say that but that if it was atypical and that he was very confident it wasn’t. He is careful with his words . Unlike the neurosurgeon… I said if a stroke why lower neuron danage too and he said he suspected some aging spinal wear and tear. It’s shown in the electrical studies but probably had no symptoms. He says the progression I feel and spasms all fit with long term limited use. He’s not doing further neuro tests. I’m getting thinners and anti spasm drugs for my hand. Physio though it’s a bit late. And more scans. Mra of head and neck. A thing down my throat to look st my heart. A something echo a 24 hr ecg and further bloods. To find out why.
I am of course ecstatic. Not to have had a stroke at 44. But to not have to tell my child I’m dying. And of course. That i am not actually dying! But it’s been so very very dark the past few weeks. For me and my partner. It’s hard to believe it and to let go of it. And just be straightforwardly happy. I suspect there are many more emotions still to come.
Thank you for your support. Very much.
Jane. Have you dates yet? X
I am so pleased for you. Goodness, life has been putting you through the wringer. I hope you can look forward to some relatively plain sailing now.
Alison
Well that all sounds much more positive going forward, though a stroke is not great news exactly! Still awaiting on dates for other tests, going to chase up later on this week but as I’ve had to be referred to him as an NHS patient now I guess it’ll take time.