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Got appointment date - should I be worried

Hi there everyone

Thanks for taking the time to read this - it’s my first time on here so please be gentle with me.

To cut a long story short I have had symptoms for a couple of years now but never associated them with MS or contemplated they could be MS.

Then after lots of bladder/ prostate & urinary problems at the start of 2020 I was sent for an MRI on my brain to check for a pituitary tumour.

Thankfully no tumour was found but they did find lesions at the top of my spine/ bottom of my neck.

This led to a second MRI of my spine and brain which from what I gather showed no other lesions than the ones seen on the first scan.

That was back in November and I have been waiting to get my appointment with the neurologist since then.

My symptoms have worsened over the last six months which has led me to chase this up with my GP and as a result I have today received an appointment but the appointment is a telephone appointment.

There’s two questions I have which I wondered if anyone could possibly answer for me:-

  1. As the appointment is only a phone appointment does this mean they have already looked and deemed it that I do not have MS so will just do a telephone appointment and tell me this? Or is it just a phone appointment because of everything that is going on with Covid?

I obviously absolutely do not want to be told I have MS but I also do not want to just be told I don’t have MS without properly been examined and been able to discuss my symptoms with the neurologist.

All I want is a diagnosis for what is wrong with me.

If it helps in answering I am based in West Yorkshire.

  1. Is it possible to have MS with only demyelination/ lesions at the top of my spine/ base of my neck and not further down my spine or on my brain? (I’m not 100% certain this is the case as I was just told by my GP who didn’t really seem too sure what the second MRI was saying with any certainty)

Hope that all makes sense and I know with question 2 you cant give any diagnosis’s and I am not asking for one I just wondered if anyone could advise based on experience

Thanks so much in advance

Yorkie :slight_smile:

I’d say they’ve given you a telephone appointment because of Covid. All my appointments have been by phone for the last year.
At least you’ll be able to talk to a qualified person about your scans and ask what they mean. I think you do need 2 separate lesion areas. It takes a long time to get a diagnosis and they don’t like to jump to conclusions too quickly as it could be one of many conditions. For me they thought it might be MS but I had to wait for another relapse before they could be certain

Hello Yorkie, welcome to the forum.

I agree with Wilf, the telephone appointment is because of covid. If they need to call you into the clinic I’m sure they will.

All you want is answers, and all of us here know just how that feels, but MS is a long-winded and complicated condition to diagnose or exclude. There are many other conditions that have to be considered, so it takes time. It’s a job for a consultant neurologist.

You’re in the system and have an appointment, so be patient a little longer. If you’ve any questions for the neuro, write them down before the appointment; you don’t want to think of them two minutes after you’ve put the 'phone down, or left the surgery, as some of us here have done. Keep a pen and paper with you, take notes if you need to. Be prepared.

Hope it goes well.

Ben

As others have said, telephone appointments are the new normal. So you can’t read anything into that, I don’t think. As for your technical questions, I do not have any idea, I’m afraid - I don’t have the medical knowledge for that. I hope that your appointment goes well. I’m sure you will be prepared with the questions you want to cover in what will likely be a fairly short conversation. I would also suggest you take notes. Good luck.
Alison

I am currently waiting to see a neurologist for the second time, after being discharged, as I have developed new symptoms since discharge.
They want to see me face to face, so I have a long wait due to Covid, but I think it must depend on individual circumstances.