I went got my MRI and blood test result on my own last week, I didn’t want to put anyone in the position of hearing my news from the neurologist. I thank the doctor who referred me to neurology- I have spoke to gp’s at appointments and told them I have many ms symptoms- I think I have ms.one gp laughed at me.
however- despite my results being missing from my notes, a call said it looks like I have ms. I’m left in limbo with what happens next. Neurologist said he’s retiring now so I’ll see someone else.
im 32, have an 11 year old daughter, was married 6 months ago.
To think I was running about 15 plus miles a week 18 months ago makes me sad. Because I can’t run now. I stopped when I fell over. And now I couldn’t even attempt it. I’ve fallen a couple of times. My legs are unstable, quick movements make me unbelievably dizzy, I have pins and needles, unreal tiredness and I am bordering incontinence.
I am self employed- no work means no income. I am terrified, angry and damn right fed up already with this! I have woken up since Thursday with my first thought being -“I have ms” and I just cry
People say medication helps etc, but I’ve cared for people with ms, I know what’s inevitable for most.
I don’t have relapses- this is every day a constant battle. I feel I have ppms.
It sounds like you’ve had a massive shock. Regardless of how much you think pre diagnosis that it is MS, being told that it is can still be a belter.
When you say you don’t have relapses, how long have you been suffering the current symptoms without improvement? The reason I ask is that a relapse can last for months and months. Sometimes you get so used to living with the relapse symptoms that they can be getting better so gradually that you don’t notice.
So don’t decide that it’s PPMS from the outset. Wait for the neurologist to say what s/he thinks. And chances are they’ll offer you a disease modifying drug initially because statistically you are more likely to have relapsing remitting MS.
Those of us who’ve had MS for a long time just get on with life as best we can, just as everyone does. And many people with MS keep their fitness levels up and continue to work, bring up children, life as normal a life as possible for years after diagnosis. Especially with the drugs that are now available.
The best thing you can do is try not to worry too much (easy to say - hard to do, yes I know!), hopefully you’ll see your neurologist soon to figure out where you go from here. You should also be assigned an MS nurse who will help you get your head around all the changes in your life.
thank-you for replying to me. It’s good just to know someone has taken time to respond. I’d say it’s probably been 3 months at this level but was definitely an irritant before that too. I just want to have an appointment- find out what’s going on and then have something to go by. I’m sure it will all happen in time but i am a very ‘need to know’ person. And annoying to think if they took notice of me all that time ago I could be having treatment now.
I will just check the post every day in hope that I’ll receive an appointment soon. I have waited since Jan for this result so I’m getting used to waiting.
Thank you again for your time and advice, it is much appreciated
A strange thing really, I’d meant to mention it in my post, when I was diagnosed with MS, the neurologist was lovely. And said he was retiring. Pretty much immediately, so I was referred to another one. And I got really lucky because I was referred to Dr (now Professor) Giovannoni, who’s a renowned expert. (I moved area so I have a different neuro now.) At the beginning especially you need as good a neurologist as possible, preferably an MS expert, who’s up to date with all the latest drugs.
So hopefully you’ll get a good MS expert neuro. You can always phone the hospital, ask for the neurology department admin / secretarial department/team and ask them for the contact details of the local MS nurse. There should be one. Or ask them to refer you. You could also ask when you’re likely to get you next neurologists appointment as well.
I believe that the stage you are at now is the hardest.
You have just had your test results and you want to know what’s in store. You’ve just had the biggest piece of news anyone is going to get and you’re punch drunk on fear. Your maternal instinct is to give MS a swift kick in the teeth. Your reaction as a partner is not to let him down.
Things will get easier as things settle, but we are all have to fight, every day, against uncaring bureaucracy, insensitive care professionals and our own failing bodies.
Don’t use a worse case scenario from your own experience with MS to prepare yourself. Every one of us is unique and we’re all going down a different road. The only thing we have in common is MS.
Stay with the Forum and you find and endless stream of help and advice from people who are a lot better at this than I am.
This forum has got more experience than all the neurologists in the UK put together.
Hi Emma, it’s a horrible stage, I did that waking up and being hit with the ‘I have MS’ thought myself, but it does stop, I promise. Mindfulness genuinely helps. I think you need to know about your appointment and you need some support. I can’t remember how I did it, but I got the number for the local MS Nurse and contacted her myself, you can also ring the hospital neurology dept. and ask whose list you are being transferred to and when you are likely to be seen. Best of luck xx
i know exactly how you are feeling as i was in limbo up until 20th feb this year when i was diagnosed PPMS i have my first appointment with ms nurse next tuesday, it honestly was a weight off my mind when i finally knew what was wrong with me, i was worried for so long that it would be something life threatening, as i new something was VERY wrong with me, in the last year and a half i have gone from being a little off balance and wobbly, to using a stick and dragging my foot. i now work from home virtually full time and rarely leave the house but i have a wheelchair being delivered in a couple of weeks so i am hoping i can start to get out a bit more, there is life after diagnosis i found it to be comforting to know the reason why i am now like this, i plan to make the most of life and get out and about for as long as i can, i have two concerts to go to this summer and NOTHING will stop me from seeing bros on aug 20th lol
Claire I am glad that you feel this way. I am sure it is the best way to be and I wish you all the happiness.
However - I am just not there yet and I don’t feel I ever will be.it doesn’t help that I’ve heard nothing since Wednesday- looks like ms, I’m retiring , bye! No letters/calls nothing!
Is this what I can now expect from the nhs? Have you struggled with communication?
i have had to chase every step of the way for every mri result, lumber puncture, and even the diagnosis letter hence why it has taken till next week to see ms nurse my gp had to get the diagnosis letter from hospital before he could refer me, i was referred finally last thurs and letter with appointment came yesterday, i was not so upbeat in the beginning but after a year of tests and limbo id got my head round it before i was officially told, although i knew it was ms as radiologist slipped up in aug i didn’t know what strain although after lots of research i had a fair idea, i am 43 married with thankfully two adult children, my husband is an saint and does everything housework wise to save my energy, but does moan when i starve him of oxygen with my fatigue yawns lol, just remember a diagnosis doesn’t change anything your already coping this with everyday xx