Last reply 5 months ago
Going to see a specialist…

Hi everyone

I got diagnosed with Ms at the end of last years after falling over a number of times and complaining my leg wasnt “working” properly. After pestering the doc a bit as I knew there was something wrong I was referred for an mri and now I have Ms. Anyway I saw a neurologist who referred me to a specialist. This was in January and my appointment is now on Monday. I’ve been managing my symptoms and try to keep a positive attitude which I think is helping. What should I expect or should I ask when I see the specialist? It’s at the qe hospital in Birmingham, UK.

I’m slightly excited at actually seeing someone.. I’d like to find out what type of Ms I’ve got.

I did start writing this with the view of asking more questions but they’ve escaped me..

Thanks
Paul

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vixen
5 months ago

Hello @sensalize, welcome to this very exclusive club! Was the falling the first lot of symptoms you have experienced, or can you trace it back? It might be that a lumbar puncture is needed if you haven’t yet had one. A positive attitude is your biggest asset, but still allow yourself a little wallowing space every day, so you can maintain a sense of balance and reality. To be diagnosed today, is so much better than twenty years ago.

When you see the specialist, take a concise timeline of possible earlier flares if there are any. Will you be going alone? If so, ask if you can record the conversation, as you might want to go through it fterwards. Sometimes it can be overwhelming so is good to have a back up.

When yo remember your questions, ask away any time! X


kermujin
5 months ago

“but still allow yourself a little wallowing space every day, so you can maintain a sense of balance and reality.”

This is SO important! Remember it’s there, and acknowledge it. I can tell you from experience that ignoring it does NOT make it go away… πŸ˜€


sensalize
5 months ago

Thanks both, I do allow a bit of wallowing time. I find listening to music a better time than any too. I’m so much more emotional now… And could cry pretty much at anything and everything.
Before I found out I had ms or thought I was ill, I’d said to myself let’s just take it easy… I’d stopped rushing for the train and bus and stopped being in a rush. Ive carried this on and thinks it helps with easing stress. Ive also taken up photography and find it very therapeutic. I use a stick now as my balance is terrible. I need to increase my core strength but get tired pretty quickly.

Trying to trace it back there’s a few things, when I needed the toilet I had to go my tolerance to alcohol diminished… Don’t know if that’s just me being a lightweight though. And the Fatigue is another big one. I went for a walk round the park for lunch while at work daily and suddenly could barely manage it or if I did I’d be so tired when I got back to work I could have had a nap.

I’m taking my wife along with me.


sensalize
5 months ago

What’s a lumber puncture for?


stumbler
5 months ago

Hi @sensalize and welcome.

The Lumbar Puncture is used to confirm the diagnosis, if the MRI Scan is not conclusive.

More details here :-

https://www.mstrust.org.uk/a-z/lumbar-puncture


wjgregg
5 months ago

Hi Paul,

I’m glad to hear that you are adopting a positive attitude. It’s the only way to travel.

I recognise the emotional aspect of this. It felt weird when it began happening to me pre-diagnosis. Look up “Pseudobulbar affect”.

I hope things go well for you, and that you have a positive interaction with your doctor(s). If you can find a neurologist who specialises in multiple Sclerosis, rather than a “general” neurologist then you’re off to a flying start. I got very lucky with the chap I have in Leeds (I say “I”, but it was my wife who found him while I was languishing in a different hospital with a major relapse last summer).

Good luck, and keep us all posted.

All the best.

Jon


arbee
5 months ago

Your story sounds very similar to mine (if you’re going to QE then we’re probably not a million miles away either), a few years ago my hands and feet went completely numb, GP wasn’t sure what it was, sent me for nerve conductivity tests which came back fine, feeling started to come back so I just carried on as per usual.
Around this time I really fell out of love with alcohol too, went from someone who went out every weekend without fail to someone who only drinks when they have to eg. weddings. Any more than a couple of pints and I’m up all night being sick followed by a 3 day hangover, just not worth it for me anymore.
My left leg would also ‘stop working’, if I went on a reasonably long walk (as I found out the hard way, halfway up a mountain), my brain would tell it to move and it just wouldn’t!
Then, just over 18 months ago, my hands and feet went numb again but much worse this time. As my GP wasn’t much help the first time I went to see a chiropracter as I thought it may be some sort of trapped nerve, he sussed it right away and sent me off in an ambulance, after 16 hours in a&e I eventually got an MRI scan which led to me being diagnosed with RRMS.
It was a massive shock but also a massive relief in a strange sort of way, as I started to read up on MS I realised why I had been suffering strange symptoms for years, I hate hot weather, sweat bucketloads even when I’m cold, anxiety attacks, bladder and bowel trouble,fatigue etc. Obviously it would be better if there was a cure but at least I now know why I had these strange things happen to me and have an excuse next time I get called lazy etc.

I have been on Tecfidera for about 6 months now and haven’t had any relapses since, I have permanently numb hands and feet and get fatigue pretty bad but other than that lead a reasonably normal life, work full time (although I am office based these days) and still able to do most of the things I always used to (although my 5 a side football days are unfortunately over).
There are some encouraging results being reported from some new treatments so there is hope for the future and with a range of DMT’s available to help slow down the progression (everybody is different but there should hopefully be one that suits you), don’t think it’s the end of the world πŸ™‚


sensalize
5 months ago

Hi all,

Had my appointment today, went ok I think apart from my local hospital not sending over my previous mri scans over to the neurologist. She said as I’d had two courses of steroids between the last ones another one 5 months later wouldn’t go a miss. Explained my story massively helped by my wife because my memory can be terrible at times we reckon I’d had a significant relapse end of last year which has left some symptoms but there are also signs of reversal which is good. She said she would talk about me when all the neurologists get together and discuss if I’d be eligible for lemtrada, she did mention stem cell therapy as well but I suppose it’s what they see in the next mri and they decide.

All in all a positive experience if not a bit nerve racking. I don’t normally get nervous but I did today.

No lumbar puncture mentioned either which is a bonus πŸ˜€


stumbler
5 months ago

@sensalize , sounds like a good, constructive appointment.

Shame about the previous MRIs not being sent over. It’s no wonder the NHS costs so much, when they can’t do the simple things properly!


linzzzi
5 months ago

Hi sorry to butt in on your topic but i have an appointment at the Q.E in 2 weeks and wondering how you found them. Did they explain things – did they do any tests – did they listen lol x x


sensalize
5 months ago

Hi Linzzzi,

I found the Q.E pretty good, much better than my local hospital russells hall.. I was seen on time and by a friendly specialist, unfortunately I cant remember her name but she did listen, someone on this thread earlier said to go in with a decent timeline of how things progressed which I did and it was helpful.
She explained quite a lot, I think she would have been able to a bit more had my local hospital sent over the mri scans.

I had no “tests” done apart from her seeing how strong my leg is is, my walking ability etc

The medication or treatments mentioned when reading seem pretty scary/intense but it is what it is I think. Id like to know next what would happen if I was just to “leave” it but I don’t know if they can answer that… could be wrong though

Hope your appointment goes well Linzi πŸ™‚


andy365
5 months ago

Hi mate

Just been reading your thread I am at the QE also not sure who your consultant is but I saw a lady initially but she was a general neurologist. I then got passed on to a neurologist who specialised in MS.

I had my first round of Lemtrada in May last year and have round 2 in 3 weeks time.

The worst part about being diagnosed is being given a choice a choice in treatment is terrifying.
When in all the years of going to hospital do you get a say in your own fate?? I went for the one which I felt gave me the best odds and least amount of daily, weekly or monthly stress.

Whatever you choose my advice would be make a decision and forget about it. You will drive yourself mad overthinking and one day you will be yes and the next no.

Oh and I would recommend you get this book that has just come out β€œ The unmapped mind by Christian Donlan” life changing read about a guy through diagnosis and treatment, witty and beautifully written and very reassuring.

If your struggling or want to know more about my treatment drop me PM or we can meet up an I will buy you a coffee.

Keep going it will be ok πŸ‘


sensalize
5 months ago

Hi @andy365

Thanks for the reply, hope you’re feeling Ok about round 2 approaching. Hope round 1 went ok too…

I saw a lady too, surname was Smith but I can’t remember the rest of the name. She’s referred me for another mri, hopefully the appointment will come through soon. My next appointment for the neurologist has come through but it’s not till the 20th November and I guess then they will discuss the future with me. Seems like a long way away though…..

I’ll have a look at the book. Sounds interesting
Someone from my work has bought me a book about the swank diet… I’ve yet to read it yet though.

Thanks for the offer of a coffee, if you ever fancy a chat or whatever back at you. I’m not far from Birmingham but live nearer Dudley. I work in Solihull.

It is crazy being given a choice but I’m doing pretty good at ignoring/forgetting about it without been completely ignorant I think. I’m not bad at the moment. I can’t run, have a few aches and pains and my leg doesn’t always work but on the whole I’m sound πŸ™‚


grandma
5 months ago

Hi sensalizel , the choice of drugs now is great compared to 25 years ago when I was dxd. Don’t be too stressed about it, stress is not good for ms! You will get loads of info on the drugs from your ms nurse, the fonts of all knowledge, different drugs are indicated depending on your type of ms, the severity, your age, lifestyle, and everything else, so take your time, read all the info, ask questions, start a list now, you always think of something after you have just let the consultation, having to wait until November is no ad thing really because it gives you time to do your homework, make your lists, and I think it’s great that your other half is so involved! Good luck😍


andy365
5 months ago

Thanks I am hanging in there struggling with bowel and bladder issues the nicer side of MS 😧

I live near by really in Walsall so I will give you a message after my treatment on June 4th probably be mid June and we can have a coffee if you like.

Have you got a MS nurse? She will be helping you until your next appointment? If not self refer and chase him or her up.


sensalize
5 months ago

@andy365 I have got an ms nurse.. Ive met her once and she seemed nice. I’m meeting her again sometime in June so not long away.

Drop me a message after your treatment
.. How long is the treatment course? Will be happy to buy you a coffee.πŸ˜€

@grandma I’m doing OK at not getting stressed. My other half had been brilliant. I couldn’t do this without her… Or the kids.
I do need to right down questions otherwise I know I’ll forget them 😁 whenever I go to the doctors my wife asks what was said and I haven’t a clue πŸ˜€

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