Hello there, I am currently undiagnosed and keeping an open mind about what could be wrong but following my first neuro appointment yesterday things are looking like they are pointing towards MS.
I wont bore you with a list of symptoms but basically I am coming to the end of a 10 week “episode” that mainly featured the right side of my body severely contorting up to 40 times a day, made considerably worse by the spells of hot weather and a couple of mighty hangovers, as well as some other worrying stuff. Thankfully it has tapered off with no spasm attacks in the last week and a half but I am still completely exhausted and foggy headed. There are some other things that have been going on for a few years (pins and needles, Lhermittes, periods of exhaustion etc) that have factored into the MS idea. I did intented to write a more detailed post but I’ve not got it in me.
So at the appointment yesterday we did the full load of reflex/eye/balance tests which were fairly normal, and the neuro gave me 3 options as to what she thinks is wrong. Lymes (very unlikely, but I asked her to test for it anyway), some sort of “muscular dysfunction”, or what she believed to be most likely: MS. She has advised I get an MRI and lumbar puncture in the next 6 weeks (not got a set date yet) and took a ton of blood samples yesterday.
I would be interested to know what sort of time scale I would be looking at for results? (I should have asked yesterday but I had already been in there for an hour and frankly my head was mashed). I assume the bloods will be fairly quick but I’ve never had any other kinds of medical tests so no idea how long I should expect to wait. I’m sure they will explain this at the time but I feel like I need to have a rough map in my head of what might happen in order to feel like I have some control going into this. I am sure you understand.
The MRI and LP will be on the same day. I am trying not to completely freak out about the LP, not good with stuff like that! Also, if it is of any relevance, it will be at Glasgow Southern General, so if anyone has any experience of them particularly that would be interesting.
Of course, I understand that neurological stuff is complicated and individual and I am resigned to the fact that it could be months or years before I find out what on earth is going on.
So in summary, Results: should I expect days, weeks, months?! she has said that if they are clear I need to come back in 3 months anyway so I assume I will know something before then.
thanks.
hello;
i am NHS lanarkshire so had my LP at glasgow southern general, and have had my MRI’s at the golden jubilee in clydebank ( i think i was sent there to get a quicker appointment)
to give you an idea- i had LP first week in Jan and it was mid feb before i eventually tracked down results- and i mean i had to physically chase them by phoning neuro secretary, then gp, then make a gp appointment, then speak to neuro on the phone to go through them.
All in from first onset of symptoms to diagnosis i was August 15-March 16. the bit that seems to take the time is the sending of referrals from neuro to departments.
Thanks for the reply 
ah bummer that sounds like a bit of a nightmare. Yes I concur on the sending of referral, my intitial referal took weeks to be sent from the GP to the neuro, and was down graded to non urgent, and to find this out I had to do a lot of chasing up. But as my symptoms had got a lot worse by that point I went back to the GP and was given a new, urgent referral which was sent off straight away and I had the appointment letter within a week. I plan on being firm but fair and will keep chasing stuff up if it seems to be taking an unreasonable length of time.
I am remaining hopeful that I will have some sort of picture within the next 3 months, as the neurologist had me book in an appointment for 3 months time " incase the tests come back clear", which implies that she thinks there will be some sort of result to discuss by then? That’s how I read it anyway. Kicking myself for not making sure this was all laid out clearly but I was reeling a bit. I will take someone with me next time to make sure everything is covered.
I don’t expect a complete diagnosis any time soon but any sort of idea of where it might be going would be fab.
On the plus side, I did find her to be very througher and non dismissive, which was my biggest concern so so far they seem a decent place.
Hi Sophie
i deal with Southern well Queen Elizabeth now lets just say it been a very stressful progress getting any results. They said 2 weeks to gets results mine took way longer cause my consultant at time was on holiday and then was transferred with my knowledge to new consultant which meant I waited 12 weeks to go over the results of the letter I was sent out. I am under Dr Overall now and see one of his teams who has done a great job so far and now waiting to see MS nurse about medication.
I would say given them 2 weeks for LP results and MRI results can take about 6 weeks but I gave them about 3 weeks and gave them little call to see how thing where progressing as I’ve found in past you can be left sitting.
I’m so glad I’m not the only person that found actually getting and discussing results a bit stressful with the southern general!
waiting on treatment seems even more so- diagnosed March and still waiting on confirmation of start date for lemetrada 
have had all the screening, have had 2 relapses since I last saw neuro in May aswell…there just seems no urgency at all- limbo doesn’t end with diagnosis so it seems!
sd
Oh, regretting asking now! Such a shame. I am actually not sure who I saw, I had Dr Murray on the letter but it was someone different and I didn’t catch her name. (tired, foggy and nervous so I feel like I didn’t do everything you are supposed to at these things.) I’ve had a look at the list of consultants on the website but none of them ring a bell, i’m hoping it will be on the next letter. She seemed pretty on it though. right, well when I get the scan/puncture I will ask for a clear time frame and if it goes beyond that I will chase it up pretty hard.
well, in all in, this is bloody rubbish. I only moved here recently and I don’t know anyone and I’m not working so distracting myself is proving hard. Ah well, best just to crack on I guess. Good luck to you two in progressing with your treatment, I hope it becomes easier for you.
hi all im dealing with the southern general too absolute nightmare, i have appointment tommorrow wich i had to harrass to get as the admin person assumed i had been discharged, so its been 7 months now since i was last seen really hoping i get a gd doctor as this will be the third one now
hi Kizzy, sorry for the late reply. Sorry to hear you are having such a hard time with them. I have actually found them to be fine. I had my consultation on 25 of July, my MRI and LP on the 19th of August and am awaiting the results. I was told two weeks so if I haven’t heard in 3 (to account for them having to send things in the post etc) then I will phone the secretary and chase it up.
My advice would be a get a specific time frame for things when you see them and if it goes beyond then phone the neurologist secretary and chase it up, don’t fall through the cracks! Also when you do see them take notes, i didn’t and was really flummoxed and I wish I had.
Good luck with it