I found out i’m diagnosed by way of a rushed phonecall on 1st February 2022… & am trying to find out if others have had any bad axperiances?
The call was from an ms nurse from my local hospitals ms team…
My previous appointment with the ms team/nuerologist had been on 22nd september 2021 followed by a letter to myself & my GP dated 23rd september 2021 confirming my next appointment would be on 9th february 2022…
As you can imagine the call was unexpected & i was stunned when the nurse spoke of my diagnosis being made at a monthly MDT meeting at the Royal London Hospital… i asked quite bluntly what diagnosis? Only to be told the letter sent to myself & to my GP could be reviewed with me at my upcoming appointment but my GP will already have liased with me re vaccines & things they wanted before the appointment. And they wanted to make sure i’d read through the information they enclosed regarding drug treatments they had hoped to start…?
I made it quite clear i had recieved nothing from them since letter dated 23rd september & was told maybe postal problem & that i should call my GP to ask them to go over the diagnosis & treatment options with me…
I rung my GP who had not recieved anything & then i spent the next 3 days on the phone harassing the MS team, who remained adamant my GP had the information, to get a very basic (4-5 sentence) letter sent by email to my GP…
I attended my 9th february appoinntment in a complete daze & was given no explanation or apology or any answers to my questions as to details & decisions of my diagnosis… wouldn’t even give me a date of diagnosis??? The nuerology/ms consultant said those details were of no importance & that i needed to choose a course of treatment between MAVENCLAD tablets or OCREVUS infusion…
I basically went into a semi shocked state as she was explaining her way through these treatment pamphlets, pointing at schedule of treatment charts & i had to tell her to stop as i wasn’t taking in what was being said! Her final words were that i didn’t have to take any of the two treatments if i didnt want to because " personally i don’t think you have MS… but maybe extreme migraines… & some underlying joint issue"…
She then handed me a special chart to record my migraines & told me to get intouch if i made a decision on the possible drug treatment…
ANY THOUGHTS WOULD BE GREATLY APPRECIATED…
X
On the bright side, those are a couple of the more effective treatments to be offered, which is good, apart from the fact your Neuro thinks you don’t have MS. I understand that MS can be difficult to diagnose, but your Neuros opinion is less than helpful and makes your choice much harder.
A degree of certainty would be nice.
Assuming you do have MS, then the decision guide is worth a look.
MS Decisions - drug comparison results | MS Trust
This is from the Professor of Neurology at Barts and concerns migraines.
[MS & headache: another elephant in the room (substack.com)](MS & headache: another elephant in the room
Am I sure that I have MS? - by Gavin Giovannoni (substack.com)
I have been on these boards a couple of decades now and am not sure I’ve ever heard of such a shambles. What on earth does the Consultant Neurologist expect you do do with the information that you have been dx with MS (by her, presumably) and offered two very heavyweight drug treatments to control it, but that she doesn’t personally think you’ve even got it? Have I got that right? If so, honestly, I have never heard the like. I am sorry that you have been pitched into this chaos. I wish I knew what to suggest to you.