Last reply 1 month ago
Newbie… might have MS

Hey folks,
So I’ve been having weird neurological symptoms for the past 2 months – I’ll not bore you with the long list! I had an MRI on Monday and the neurologist called today to tell me I have a patch of inflammation at the base of my skull that explains some – but not all – of my symptoms. He says the other symptoms are probably functional neurological disorder. It would seem strange to me that I’ve simultaneously developed brain inflammation and FND! He said this could be a one off or an indicator of MS. I’ve to go for blood tests and a lumbar puncture, then he’ll decide whether to start medication. A few questions I’m hoping you can help me with:
– how long have you had to wait to get LP?
– is it the decider on whether he puts me on medication?
– did you recover fully from your first ‘flare up’? I have improved a lot but still not recovered after 2 months
It has really sucked not being able to drive or work for the past 2 months, and now all I can see ahead is more waiting and more tests 🙁
Thanks in advance for your help x

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peterfrancis
1 month ago

@caroline_cuddy

Hi and welcome

You seem to be in MS Limbo at the moment, with alll the waiting and toing n throwing hoping for an answer… we’ve all been there.

My diagnosis of SPMS was not too long of a wait compared to some I’ve spoken to.

My Lumbar Punc happened within 3 months of initial diagnosis following initial tests by Neurologist and blood tests.


caroline_cuddy
1 month ago

Thanks @peterfrancis. I was a bit worried when he said he’s now transferred me to NHS and there’s ‘a bit of a wait’. Northern Ireland has very limited neuro provision and then with the Michael Watt scandal they are all handling his 2500 recall patients as well. I went privately for the initial appointment and scan as I was told the NHS waiting list for neuro was 2 years! I am clinging to the hope that this is CIS and not MS, but also preparing myself for the worst. Is the LP as horrific as some people say?


peterfrancis
1 month ago

@caroline_cuddy

A 2 year waiting list in N. Ireland?!… Jeeeez.

I found the LP procedure painless but uncomfortable, others have told nightmarish tales of pain, so it’s all subjective and different for each person.

Yoiu’ll be fine, just don’t think about it too much.


caroline_cuddy
1 month ago

@peterfrancis I know it’s crazy isn’t it? https://www.bbc.co.uk/news/uk-northern-ireland-46343234
I’m not usually squeamish about needles or anything but my anxiety has increased with the onset of my symptoms. I guess worrying where all this is going and am I going to wake up tomorrow with something else wrong with me! By the sounds of it it will be months before I get the LP so I will try to put it out of my mind until it’s happening. Thanks for your replies 🙂


stevenh67
1 month ago

Hi,
I waited a few weeks for LP once neurologist asked for one for me. Mines ended up being clear but I was still diagnosed with RRMS a few months later due to the MRIs and continued symptoms and a couple of flare ups. I’ve had some of the same symptoms since day 1 some 2 1/2 years ago but the worst of the symptoms went and only came back during my 2 flare ups. The LP itself was very uncomfortable, I had a few short sharp pains during it. Wasn’t as bad as I thought it would be based on what I’d heard. Good luck.


rogersouthall
1 month ago

Caroline, try not to worry, it will all happen, never as quick as we would like but hey ho, good luck and at least you have found a site with decent people to call on, have a read of my blog, it is a laugh but gives an insight http://www.wholesorts.com always here


caroline_cuddy
1 month ago

@stevenh67 reassuring to hear I could be waiting only weeks not months! I am improving a little bit but more on a weekly rather than daily basis, it’s hard being patient!

@rogersouthall thank you I will have a read and hopefully a giggle!

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