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Is this letter a diagnosis at last??

So - nearly 3 years after my journey began with a bout of optic neuritis - i opened a letter today my neurologist had sent to my GP and copied me in which stated the following:

SSEPs have shown tibial delay suggestive of a cervical myelopathic process that would support a diagnosis of multiple sclerosis.

My husband thinks that no - its not a diagnosis whereas I think it is??? Any ideas guys???

thanks in advance

xxx

Hi, the letter sounds similar to that which my neuro sent to my GP but my neuro did have the decency of discussing it with me first. Yes it was a MS positive diagnosis but at least I heard it personally and not by letter. It seems sad that you have had a possible diagnosis by letter. X

thanks Pops, it was a shock to see it in black and white as i thought i was just opening another hospital appointment but better to have confirmed diagnosis and be out of limbo land finally.

x

It is a relief and I hope everything goes well for you. Keep positive x

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I’m not as convinced as you - I think I’m more in your husband’s camp.

The NICE guidelines say an MS diagnosis should always be face-to-face, so I think the words have been chosen very carefully, to stop just short of a diagnosis.

“Would support” is not the same as: “It’s a done deal!” Certainly, I was told face-to-face, and the write-up to my GP afterwards had bold, underlined, centered, right at the top:

Diagnosis: Relapsing Remitting Multiple Sclerosis

So left no room at all for ambiguity, and definitely no weasel words like: “Would support a diagnosis of…”

Although, despite the heading, it did go on to make clear that an MS diagnosis is never 100% certain - so he couldn’t be sued if he was wrong, because he’d added the reminder that all diagnoses are subject to a margin of error.

Tina

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I agree with Tina. ‘Would support a diagnosis…’ (i.e. would be supporting evidence if there were already a strong case for such a conclusion) does not mean the same as as ‘confirms a diagnosis…’.

Maybe you are over the finishing line and maybe you aren’t. The wording looks strongly suggestive, for sure, but not definitive. Of course, your GP might roll her eyes and tell you that this neurologist has not made a definitive statement since 1985, and that is as clear as you’re going to get. You need to ask, I’m afraid. Why not start with the GP? Or perhaps you have a follow-up appointment with the neurologist in the diary?

Alison

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thanks guys - my last appointment with my neurologist should have ben in october but was cancelled as he was on holiday and i am on a waiting list to see him.

I have had 2 “episodes” - the first being the optic neuritis and the second when i ended up in hospital on steroids for 5 days unable to walk. i have been left with a dropped foot and reduced sensation in my right leg and now the delayed tibial reaction on the SSEPs so was hoping the letter was the confirmation i needed but hey ho maybe one day lol!!!

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My neurologist was completely non committal to my diagnosis and consequently terrible for follow up referrals/professional help. My MS nurse (who I had to search out myself, 2 months following diagnosis, my neuro was totally unhelpful) was the one who gave me all the support I needed and continues to now. I immediately got the ball rolling for a new MS specialist neurologist. The best thing I could have done and I can see how unhelpful my original neuro was.

I would also say your letter is not a confirmation either, but when I was diagnosed my clinic letter said ‘I think probable ms’, What does that mean? It turned out those words were my diagnosis! The neuro explained he wanted to see me for the next five years and monitor me, whatever was going on was mild and sensory, even though I could no longer run, walk distances with confidence, start to use a walking stick, have drop foot, cycle any distance, grip properly and had new symptoms cropping up every few months.

I asked about DMT’s he said I didn’t qualify (until he decided to review my case in Dec 2015, the same week I got my new neuro referral). After reviewing my case, he offered me first line DMTs, I refused to take them until I saw the new neuro last week, he responded saying, its unlikely you will get offered anything different.

I see my new neuro last week, she thoroughly examines me, takes close interest in nearly 10 years of my medical history and tells me: You have RRMS, its been very active, I would like us to treat it aggressively with Tysabri!

My advice is to chase up that neuro appointment and if it does end up being positive for MS, make sure you get an MS nurse and an MS specialist neurologist (unless you are 100% happy with your current neuro, it is so important that you have a good one)

I must let go of the anger I hold towards my old neuro! In the meantime, best of luck, be kind to yourself and apologies for rambling on :slight_smile:

Nikki

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hi everyone,

i spoke to my GP today who said it is my diagnosis and i will be assigned an MS nurse and discuss treatments etc. He offered me a note for work and was really helpful - just got to hold out for appt with the Neuro now!!!

Welcome to the club…

I hate how ambiguos neurologists can be.

I’m pleased you got a solid answer.

Your neuro seems like he’s doing right by you with regards to the MS nurse/treatments.

Hope you don’t have to wait long for your appointment.

You’re going to have a million and one things revolving around in your head, use the forum as we’ve all been through it and may be able to offer helpful advice to put your mind at ease.

Take your time to get your head round it, even if it is what you knew was coming its still a big shock for you and your family.

Big hugs and take care.

Nikki

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thanks Zombiesquirrel - while its been the news we have been expecting and its a relief to be out of limboland - for a short time i did feel tearful and emotional. Whilst my husband has been amazing through the last 3 years - he found it hard to understand my reaction - i think he thought i would be jumping for joy we finally have the diagnosis and can move forward - bless his heart!!! xxx

Ha ha…bless him, for me it hit me like a brick wall. I was elated for the first couple of weeks then bang, one massiev train crash of emotion, couldn’t work out if I was self pitying or grieving. I realise now I had a short period of self pity, then its been a grieving process ever since as I get used to my ever changing ability/disability.

Even now, I probably try and do something a couple of times a week and get frustrated because the body says no and I end up in tears.

Glad you have the support of your husband to help you through. He may understand the gravity of ms as time goes by…if not, don’t despair, theres always this lot on here with an empathetic ear :slight_smile: x

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