So…I’ve just been diagnosed with MS and am just trying to process everything and make sure I’m doing everything I should be doing at this stage…
For background info, last July I woke up with terrible vertigo and nausea, it lasted for two weeks and was not at all pleasant. They put me on a variety of anti-nausea tablets but nothing seemed to work, so it was just a case of waiting it out. After the vertigo subsided, I was experiencing numbness in my feet and left hand, and weird pins and needles sensations running up and down my legs, so I was refered for an mri. I had that in October and saw a neurologist in November - he said that there was some swelling in my brain (around my nerve clusters I think he said - not sure if that’s correct though, I was in shock!) and that he thought the two weeks of vertigo had been a CIS, and that he wanted an mri of my spine. I had that in January and finally got the results on Friday, and he said there was a lot of inflammation shown in the MRI so he was diagnosing MS. It was a bit of a shock and I was by myself, so I know I spaced out a bit, but it was a very short appointment and pretty much all he said was that he’d refer me to a specialist to talk about treatments and also to a nurse, and that they would get in touch by letter. They then took about a gallon of blood (at least that’s what it felt like!) for other tests (no idea what - he didn’t say) and that was that. I’ve been trying to process it all over the weekend and have been reading up on the different treatment options, but I’m not even sure what kind of MS I have - I guess the vertigo was a relapse, but I still experience tingling sensations and numbess in my left hand on and off, I’m extermely sesitive to heat and I’m struggling with managing tiredness/fatigue and working full-time - I guess it’s RRMS…? I suppose I’ll get lots more info when I meet with the specialist, but I’ve no idea how long that’ll take…
I have a CIC policy that I’m hoping I can claim on so I’m going to look into that (not sure what evidence I’ll need or if the condition is progressed enough yet, though), I’ve also been reading up on the different DMDs so I’ll have some context for any discussions/decisions about those (although I’m not sure if they recomment drugs to everyone?) and I’ve told my husband, parents and two very close friends. I’m also meeting with work to go through what support they can offer (I’ve been struggling with how hot the office is and also with fatigue - at least I know why now…) so what I wanted to ask was: in the experience of people who have been through this before, is there anything else I should do at this stage? Any advice/suggestions would be greatly received! Thank you.
Sorry to hear about your experiences.
From what I can tell, primary progressive MS is more common in those aged over 40 and tends to have symptoms that stay permanently rather than coming and going; drop-foot, reduced strength and movement down one or both sides of your body, muscle-spasms and fairly severe balance/co-ordination problems ‘seem’ to be the most common symptoms. Whereas relapsing/remitting MS affects more people in their 20s and 30s, and tends to result in symptoms connected to sight, hearing, speech, memory, mood and cognition much more frequently than ppms. I’ve found that vertigo seems to be more of a RRMS than a PPMS thing, although there will doubtless be some who argue the other way.
Keep you chin up; we’re all in the same “being passed from pillar to post, this takes sodding ages!” boat when it comes to diagnosis and hospital/gp appointments, so feel free to sound off as we all have our horror stories to share.
One thing that helps for me; exercise. Whether it’s swimming, cycling, gym, walking (however slowly and far) really does release some endorphins that make you feel better, if nothing else.
Hi Clucker Pigeon, thanks for your reply yeah, exercise is not something I really do…should definitely change that! I’m planning to start trying to actually take a lunch break (I normally just work throguh) and go for a walk, just 20 minutes or so, but I’m hoping it’ll help if it’s every day. Maybe it’ll also stave off the post-lunch slump - last week I actually nodded off at my desk for a moment…
Commiserations on your diagnosis and welcome to a less-than-exclusive club
I would say start jotting down questions for your next appointment as it’s so easy to forget when you get there and the neuro starts talking to you. Also make a note of the symptoms you still have as there may be some medication that your neuro can prescribe to help with them.
In the meantime, take your time to get used to the diagnosis. I would assume they took bloods to rule out anything else as there are some things like B12 deficiency that can mimic the symptoms of MS. There is a useful section on this website about new diagnosis which compares it to a bereavement in that you go through similar stages ie denial, anger etc. It might be worth having a look at as I found it very helpful. If you find you are having a bad day, come on here and vent because the best people to really understand are the people who are going through the same thing or have been there in the past.
I also find mild exercise very useful. I walk the short distance to work when I am able to but I also know my limits and if I’m having a bad week/day then I take the car and refuse to feel lazy over it. Be kind to yourself and listen to your body. You will learn what works for you. I find yoga very helpful but then I’m also nearly 48 and strenuous exercise just doesn’t appeal anyway
Thanks for the tips I’ve started making notes for the next appointment - it’s a great idea, especially as I’ve been a bit absent minded lately…I’ve also read the section on bereavement - it has been really useful, so thanks for that suggestion too. I went for a short walk on my lunch break today and it seemed to help a little - I was still nodding off at my desk come 3pm, but it was nice to get out the the office. I used to love zumba, but my balance has been a little off ever since the vertigo incident so I’ve kind of lost my nerve with classes…and as it’s been nearly a year now, I’ve also lost my stamina! Hopefully a little walk every day will be a good start - you have to start somewhere, right?
Hello and welcome
It might be a wee bit late now, but it’s usually best to wait for the neuro’s letter before telling anyone because the whole situation is so stressful, it can be easy to misunderstand what’s said and even just to miss one word can change everything, e.g. “probably” in “probably MS”. The reason I mention it is that it has all been very sudden (what a rollercoaster for you!) and, if the neuro you have seen already isn’t an MS specialist, there’s a small chance that he/she might have jumped the gun a wee bit and the specialist may have alternatives that need to be checked out first.
In the meantime, I agree that it’s a good idea to have a look at the DMD options so that, if the specialist thinks you are eligible for them, you are able to get the ball rolling straight away. The best place to start with this is the msdecisions website.
The only “must” when newly diagnosed is to tell the DVLA. The normal practice is to give us a three year renewable licence. You should also tell your insurance company what the DVLA say (they cannot change your premium, but could choose not to pay out if you had a crash and you hadn’t told them).
Other than that, take it one day at a time and be kind to yourself. Being diagnosed takes a while to get to grips with, but it does gradually get easier and we come to learn that it could have been far worse! MS really isn’t the end of the world.
Thanks for your message. I know I was a little freaked out, but the neuro definitely said that the scan confirmed his initial suspicions (he had said he suspected MS based on my vertigo, numbness and the swelling shown on the MRI of my head in my first meeting, and that prompted him to order the spinal MRI) and that he was diagnosing me with MS based on all the inflammation around my spinal cord in combination with the other evidence. He then said that he was refering me to an MS specialist who would be in touch, and that they would discuss treatment options with me. Obviously if the specialist can find any other explanation then that would be great, but at the moment I don’t want to get my hopes up just for them to be knocked down again!
I was surprised that the diagnosis process was so quick and definite, especially given the years of limbo that seems to be the norm for so many people who post here, but I’m absolutely sure he didn’t say “possibly/probably” and he definitely said he was giving a “confirmed diagnosis”. Hopefully the specialist will shed further light on the whole thing…
Blimey Laura - sorry to hear your diagnosis news. Mine was a bolt from the blue thought I was going to be diagnosed with restless legs. That was 2 1/2 years ago RRMS and I can honestly say nothing major has really changed. Same person, same job, same life, same friends. Yes I realise I have been lucky with no major relapses or disability. Like you I wanted to find out as much as possible - information overload with a totally scroggled head!!! So take it easy about how much you read and make sure it’s reliable information and not quackery. Obviously MS site good. Also NICE guidelines for MS would be worth a read as they are doctors law and can be useful sometimes. So ok there are some new challenges with MS I have had to cope with like many. Primarily bladder and bowels and the injections 3 times a week. Essential to have a good medical team behind you as they are the gatekeepers of treatment. I try my best to be a good patient but am prepared to speak up for what I think I need. Had bundles of good advice and support from the good folk on this site. It does get easier in time. Be kind to yourself Hugs Min xx
Hi again Laura
It’s good that you have started taking a proper lunch break and I think combining fresh air and exercise at lunchtime is a good thing, definitely a good start.
Regarding your quick diagnosis, I too was diagnosed in a matter of months and didn’t realise at the time how rare that is. It was only after coming on the forum that I realised how many people are in limbo for years. I had my first incident in December 2008, my second relapse in March 2009 and a firm diagnosis in April 2009 although when I was discharged from hospital in March the discharge paperwork clearly stated MS. Although it is good to know what you are dealing with, it also came as a huge shock to me as I had had no really worrying symptoms prior to the first incident. By May 2009 I was deciding on a DMD which meant I couldn’t pretend it wasn’t happening and I think I went through the full range of emotions possible on a daily basis!! I hope you are dealing with it better than I was. In the end, I noticed that my local MS Society had a drop-in session and I went along and cried all over an older member who had had MS for many years. She made me realise that everyone goes through this at diagnosis and I would be fine. That was my turning point and then I discovered this forum. I wish I had found it earlier …
Take care and if you need to know anything, keep asking. This is the best place for knowledge and support, everyone here knows exactly what you are going through and they are always here to help.
Thanks for your message do tell me to stop being so nosey if I’m asking too much, but you mention the injections - were you recommended to start treatment as soon as you were diagnosed? I’m wondering if they’ll recommend a DMD straght away or go with a “wait and see how you get on” approach to start…
Hi again Tracey,
It has only been two days so far (!) but I’m enjoying my lunchtime walks! I’m lucky that I work in a pretty university campus, so there are some nice walks to have - and they’ll be even nicer when all the snow melts… I’m definitely still processing everything - my vertigo was originally diagnosed as viral labrynthitis and when I had the numbness afterwards, they seemed to recommend an MRI just to be on the safe side, not because they really thought anything was wrong. When the neuro said he thought it was CIS and possibly MS, I was floored by it, and then managed to talk myself into thinking nothing had really been wrong when I had to wait nearly 10 weeks for the spine MRI results - surely nothing was wrong if it took that long to give me the results, right?! Wrong…time to get floored again…
I think I might check out my local MS Society too, thanks for that suggestion. It has only been a few days since my diagnosis so I guess I’m still processing everything, but I spent Sunday morning reading a lot of info on this sight and working through the MS decisions page just to get more info and that really helped. OK, there was definitely some wallowing going on (and a lot of fear at the thought of regular injections) but I feel that I might be starting to digest it all a bit more now. I’m just impatiently waiting for the specialist appointment so I can get some more info now! My GP has recommended calling up to see if they can give me an idea on the current waiting times, and if it’s a very long time to see if there are options to book a private consultation to get the initial info I need before switching back to the NHS for treatment - I’ve never done anything privately before but it could be worth considering if it’s not terribly expensive and the alternative is waiting several months - I’ll see what info I can ferret out of my neuro’s secretary tomorrow!
Thanks again for your support
Hi Tracey - yes patience is one thing we must employ as things usually never move as quickly as we would like. To answer your questions I am going to PM you - that means personal message I.e email you More hugs Min xx