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new diagnosis (via email)

Hello,

I’m a 49 year old male just diagnosed with ms, at least that’s what I think just happened. I received the results of my LP in an email from my neurologist in which he confirmed positive oligoclonal bands and raised igG index. This, he says, along with my mri results showing lesions on the brain and spinal cord, is consistent with an underlying diagnosis of ms. All this in an email, no appointment, no phone call. Is this normal? I’ve a million questions and nobody to answer them. I have a second mri with contrast scheduled later this month. Will I get a proper diagnosis after that? I feel confused and a little bewildered.

Oh wow! What a way to find out that you have MS, I would be phoning up the consultant’s secretary for an appointment or going to see my GP to find out what to do next. There is medication that is available to help you with your remission and most people on here have MS nurse who will help you to answer any questions you my have. Good luck kay

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hi 1970

your neuro was probably trying to be kind to save you from more limbo.

my neuro informed me by text to my mobile phone because he knew how much i wanted out of limbo land.

you have an appointment later this month so list all your questions for then.

your neuro team seem pretty thorough so don’t worry.

carole x

Hi, can you email back with some questions so they know where you are at with this? If it was me, I’d contact them, as although you’ve got an appt for the MRI, you don’t mention you’ve got a neurology appt. I waited about 5 weeks between MRI & the Neurologist, although fully appreciate that’s very quick compared to others.

Like Carole, I wanted to know ASAP. I asked them to drip feed each result through, but it doesn’t sound like anyone has had that conversation with you? You needn’t deal with this on your own. Don’t let Dr Google answer your queries.

I’m 48 & diagnosed mid June. I worked in healthcare for over 20 years & you deserve a better patient experience than the one you describe. This could be the start of a lifetime journey & you need to set off on the right path.

Thankyou 1970 I was diagnosed in May after being sent for a brain MRI to support idea I had had a stroke. MS was the last thing I expected to be told having had a spinal MRI last Dec and told that everything was fine. Turns out that someone had miss read the spinal scan. Saw the consultant neurologist to be told by him that it was MS and I would be discharged by him and referred to MS specialist. No time scale given as to when I would see the new specialist but after waiting 9 months for the original referral to the neurologist not surprised that I heard nothing about the referral. Imagine my surprise when sent an appointment for a spinal and brain MRI without any one consulting me to say this was going to happen. Still have no appointment to see consultant or someone on his team unable to get results from my GP as they no nothing about he appointment .Really feel in Limbo , sorry that you were sent results in an email but that is better than having heard nothing and having to enquire from the radiologist who authorised the MRI. Is this usual,suggestions on what I should do.

Hi

Read the above with interest I was diagnosed in May having had a brain scan which showed MS. I was totally surprised as I had gone for the scan because it was thought I had had a stroke.

I had had a spinal MRI scan 4 months earlier and had been told there was nothing there. Big mistake someone had misread the scan results. I was told by the neurologist that he was discharging me and referring me to an MS specialist. I then heard nothing but was given an appointment for December. Imagine my suprise when I got a letter to go for yet another MRI scan (brain and spine with contrast) with no explanation as to who had authorised the scan and no consultation with me. No explanation as to when I would get the result and how long it would take.

I too feel in Limbo and have no idea what to do next so an email although although unkind at least has acknowledge your existance unlike my experience. Is this common and what I can expect in the future.

Thanks for your replies. I left a message with nuero secretary this morning asking for an appointment to discuss it all face to face. Should hear back next week. There are too many technical terms in the email for me to understand it all. I suppose after 18 months of frustration another few weeks should’t hurt too much.

Hi Jab 25. Can you contact the neurologist that initially saw you? Was it via the NHS? If so, may be worth copying the letter to the PALS department too, explaining you are trying to get a prompt answer to your query and that you’ve been left in the dark with no communication for months. I too was treated initially for a stroke, but I’m lucky as it didn’t take long in my area to reach a diagnosis, but I pushed and pushed. Don’t know if that made a difference or not. That was via the NHS. Good luck. That’s not how your journey shoul start.

There is some terrible diagnostic practice going on all over the place it seems. From diagnosis via email, to just having it casually dropped into conversation, and on to having appointments made for MRIs with no forewarning.

So many of you in limbo, or half in and half out! If you get bad treatment, or just dreadful communication. As trying2beserene said, contact PALS (Patient Advice and Liaison Service). It won’t make your experience any better in the short term, but it may make the neurology department of your hospital aware that this is not the way to communicate with vulnerable patients who are getting very bad information in ways that are unhelpful at best and deeply concerning at worst.

It does sound that 1970, Jab25 and the anon poster, have all been badly diagnosed with MS and then left dangling in limbo. You all deserve better than this. You all should have proper appointments with a neurologist who tells you for definite that you have MS. Also whether it appears you have relapsing remitting MS (most likely) or a progressive variety. You should be given the contact details of an MS nurse who can help you through the minefield that is MS.

As 1970 has done, if you are floating in limbo, phone your neurologists secretary and ask for a face to face appointment. It’s the least you deserve.

Sue

That’s good to hear 1970. Hang on in there. Hope you get a quick & helpful response.

I heard back quickly from the neuro secretary and now have an appointment this coming Tuesday. You definitely have to be persistent to make any headway.

jab25, I also had an appointment for a 2nd mri with contrast delivered by letter with no explanation.This was at least two weeks ago.The neurologist seemed unaware of it in his email this week because he wrote of scheduling a 2nd mri with contrast at an unspecified future date.

Sadly neurology seems to be a very under resourced area. Lots of great people but…

Pals I have concluded is a amazingly successful solution. It sorted things for me 2 years ago & I have read over time lots of people helped by them.

The down side is that they can’t stop anyone having ms.

Hi 1970, what a prompt response! Brilliant! Good luck for Tuesday. Take your list of questions with you! Hopefully they’ll be able to tell you who referred you for the contrast MRI from your notes??? Anonymous - PALS are a great, often underused, resource. Good to hear you’ve had a positive experience in the past.

Brilliant result 1970. Let us know what happens.

Sue

Well, I had a second email from the neurologist yesterday. He reviewed my scan and LP results with colleagues and they agreed I have PPMS. So that’s official then. Wow. I’ve been convinced for over a year and a half that I have MS but now it’s real. At least I’ll get to sit and talk to the neurologist next week. The email was also copied to the local MS nurse so I imagine I’ll hear from her soonish. I feel pretty apprehensive about the future.

Well now you will be able to get help now from your MS nurse and to be able to talk to the neurologist. It’s a good idea to have someone with you and a list of questions that you want answered. Many on here will tell you that it takes a while to sink in even though you were expecting it, it still comes as a shock.

Also you are not in limboland, which is good as that can last a long time. Eighteen months is not to bad some here have waited a lot longer and others have been admitted to hospital and found that they have ms by the time they can go home.

Good luck for your appointment.

Kay

Hello 1970

At least you now have a couple of days to think up questions for the neurologist.

One thing you could ask is whether you might be a candidate for Ocrevus. It’s the only disease modifying drug (DMD) that’s licensed for PPMS. Have a look at https://www.mstrust.org.uk/a-z/ocrevus-ocrelizumab

Also, you could ask to be referred for physiotherapy. It’s a good thing to get as fit as you possibly can, it will pay dividends in the future. So if you have any physical deficits, you can work on these with the physio as well as strengthen your core.

As Kay said, it’s a really good idea to take someone with you. Preferably someone with a decent memory. It’s so easy to sit in front of a neurologist thinking you’re following everything and will remember it all. Then you leave the room and you’ve instantly forgotten half of what was said.

Best of luck for Tuesday.

Sue

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Ive just been through a similar thing. Tests ongoing for over a year and seen a neurologist 3 times since January. Finally got a diagnosis in June only to be told he isn’t an MS specialist so I’ll have to wait to see one. The appointment came through for October!!! I contacted the PALS and I have received an apology plus my app with the neurologist has been brought forward to September ( a little better) and I had a call from an MS nurse who I’m seeing tomorrow. Its so cruel to be told you have MS then told to go home and not to worry! I am armed with so many questions tomorrow… Finally feel I can see the light at the end of a very long tunnel!

1970, hope you got on ok today & got your questions answered. It’s hard not to feel apprehensive about the future. I’m leaning on anyone who will let me! Lisakw - gosh that’s not the best start. Great you used PALS. Good luck with the MS nurse. I’ve met mine once so far & they were really helpful.