Just before Christmas I had a bit of an episode. It didn’t last long, but scared me, and when a few days later I was still feeling dizzy and nauseated I decided to visit the GP. When I mentioned having felt weakness in my left arm I was referred to the stroke clinic at the local hospital for tests. They did a brain MRI. I got the all clear for a stroke, and was told it was likely just a fainting event. You can imagine my relief!
But then a week later I got a call back from the Dr at the stroke clinic telling me that upon closer review a couple of lesions had been discovered on my scan, and that they suspect it could be MS, but more tests would be required for a diagnosis.
So now I wait…the NHS website says average wait time at my local MS clinic is 13 weeks…I’m not really sure how I should be feeling right now. I’m trying not to worry because there’s always a chance it’s not MS of course, but I also don’t want to be too optimistic and get knocked back if it is…
im not really sure what I’m expecting from posting here. I’ve not told many people about what’s going on, and don’t really want to until I know more, so I guess it’s just nice to get it out there and talk about it a bit.
Any tips for coping when in limbo?
I’m sure other more experienced people will post on here, but, I would have thought they would run a load of blood tests to rule out possible causes of lesions. There are loads of reasons for lesions, ageing, migraines been just a few. I’m not a doctor and can only go on my experience, obviously we don’t know your exact circumstances and only a professional can give a diagnosis. Unfortunately, there is nothing to speed up the process, but you could keep a diary of symptoms and a list of questions ready for your appointment,just so you don,t forget anything. Is there any odd symptoms you’ve had in your past that you might have ignored ? If so jot those down as well. As you say it’s a worrying time and this forum does provide a sounding board at least and you can share your concerns confidentally. Best of luck and try not to worry too much, much easier said than done I know from experience.
No real useful tips. Speculation is not easy to deal with, all a bit scary.
What would you suggest if it were a close friend of yours in this position?
I would probably try some distractions and whilst being aware of the possibilities, only worry about the actualities. In the meantime build a network of reliable friends and family whom you can rely on whatever turns up in the end.
Thanks Both. I’m not really sure what I’d say to a friend if I’m honest, but I suppose the same things I’m already telling myself - try not to worry, if it is MS i WILL be able to deal with it with support from friends and family, etc etc. I think I just need a bit of a sounding board more than anything as I’ve refrained from telling too many people about whats going on, so the anxiety is all pent up. I run home everyday with fingers crossed I get something through about my appointment. But nothing yet, although only been a few weeks. Seems like a lifetime though!
Writing down symptoms sounds like a good idea, because I have already been thinking back and its hard to distinguish likely symptoms from those ‘symptoms’ which my mind is telling me fit a possible diagnosis, but then really have nothing to do with it. I suppose the neurologist will be better suited to tell me what is notable and whats not.
A bit more about me - I’m 31 yrs old. I had blood tests and and ECG when I had my stroke assesment - all clear. I’ve been told I will need a lumbar puncture (NOT looking forward to this!) and Evoked Potentials test (much less scary sounding). The neurologist I saw for my stroke assessment seemed to suggest possible MS in some varying degree was the likely outcome, but that i would need all of the other tests to confirm a diagnosis, one way or another.
It does feel good to just be able to talk about it, so thanks
I think you might need to be clear what you’re waiting for. Is it an appointment with an MS specialist neurologist? Or an MS nurse clinic? If what is being suggested is more tests, then an appointment with a neurologist would be much more useful. S/he would do a full neurological examination and then refer you for more tests, maybe another MRI (perhaps with contrast dye which shows more clarity), and possibly a lumbar puncture or evoked potentials tests.
Do you know the name of the MS neurologist? If so, you could phone their secretary and ask what you’re expecting. Or phone the hospitals appointments team and check that you are on their radar and exactly what you are waiting for. You might also find that by being proactive you can get a quicker appointment.
Meanwhile, time in limbo. Don’t forget, until and unless a neurologist says the words, you don’t have MS. So try and put the scary thoughts from your mind (once you’ve checked on appointments). Hopefully the symptoms you’ve had have now either gone, or are gradually improving. So try to concentrate on good things.
It’s a very idea to treat this occurrence as a spur to improve your fitness (unless you already do this). Whether you do or don’t in fact have MS, building a strong body, in particular your ‘core’, will pay dividends.
Feel free to come back here, ask questions, vent frustrations or just ask for support. Meanwhile you could read up on MS, the process of diagnosis (or otherwise). Look at the resources on this site, or look at the MS Trust. Avoid googling generally as it won’t help, you’re likely to discover that you have a case of plague.
As Sue says, definitely worth phoning your outpatients appointment line and politely enquiringly if they have received your referral and they can give more accurate waiting times. Nothing worst than waiting for that white hospital appointment letter! At least if you know rough dates you can double check that you haven’t been lost in the system or the letter lost in the post, believe me it happens.
I’m not generally very good at being ‘pushy’ but I think I may have to give it a go in this instance. Knowing I’m in the system and even a rough idea of likely timescale might give me some piece of mind
Pushy’s not necessary. Just a polite call to see where you are with regard to waiting times. All perfectly normal. And the appointments team are generally nice and used to people calling. (You might even get a cancellation!) The Secretary’s of neuros are sometimes a bit fearsome, but generally not.
It’s just a matter of being sweet and nice and enquiring in a non aggressive way.
The main bits I would chase are your LP & evoked potentials test as a neorlogosist will need these results for both a yes it’s ms or no it’s not. If you see the neorlogosist before these tests & results being back you run the risk of ‘probably’ or ‘probably not’, Dignoses and back into limbo for even longer.
Good news - I’ve had a date confirmed for my appointment with the neurologist - 12th March. Until then though, the wait continues…but there is a mild sense of relief having a date in the calendar. Hopefully I’ll get some answers soon
March seems such a long way off?
I couldn’t bear to wait. I visited to a private neurologist (£150, GP referred me) and he diagnosed MS, by reading my first scan. He wrote a prescription for steroids. I couldn’t afford any other private treatment and so, have subsequently had another MRI and lumbar puncture with the NHS. A neurologist appointment recently, confirmed a diagnosis of MS, however, the process has taken 8 months. I often phoned the neurologist’s secretary to try to speed the process up, I even offered to help type letters!
Of course you may not have MS and things might be clear for you, so while you wait, in the meantime, eat well, keep fit and have brilliant moments with those who love you.
Warmest thoughts Ali
Mud runner, quite understand sense of relief when you receive appointment, means there is one less uncertainty whirling round your head. If you don’t mind just curious why your called mud runner - do you do those tough mudder competitions? My previous line manager did those - I said if he wanted to practice running in mud he could help us on the livery yard as with all the rain it’s like a bog! He declined for some reason. Good luck at your forthcoming appointment.
Im a bit of a trail runner, off road, mountains, mud…all the good stuff, although unfortunately have not felt up to running much lately…trying to get a few gentle miles in here and there when I can, but not totally felt myself the past few months :-/
Thanks Ali I’ve thought about going private but not sure what I’d achieve really…other than a possible diagnosis a bit sooner, but from what I’ve been reading its not unusual to spend several months, if not yrs, waiting for answers. I’m going to let the clinic know I’m available if they get an cancellations so with luck I might get in a bit sooner. I’m trying to be optimistic, but when one neuro tells you they suspect MS and then refers you to a specialist it’s hard to be too optimistic…hopefully I’ll get answers soon. How are you getting on now then? Have they got you started on any DMDs?
Hope you can get back to doing what you love, even if it’s at a slower pace. Nothing like breathing fresh air, seeing the scenery to ease all your troubles. I find that I always feel better after seeing the horse even if I haven’t been up to riding. Good luck.
just feeling like I need to talk. My husband has been great through everything so far but I sometimes feel bad burdening him with my worries. I’ve been a bit of a downer the past few weeks, and I know it takes a toll on home too. Just not feeling myself. My lack of energy, headaches, dizziness, various pains, weird feelings and tight muscles have all but stopped me from running, which I love, and I’ve already had to drop out of two events I was really looking forward to. Some of all this is probably mental, I know. The anxiety of wondering what could be wrong only makes things worse, but anyway, it sucks. I’m seeing my GP next week to talk about a few issues, and have my neuro appt in March (although will be phoning the appt coordinator regularly to check for cancellations!). Because I already know I have lesions (prefrontal cortex and corpus collosum), and it was the stroke Dr (neuro) who first mentioned MS, I can’t seem to shake the possibility, knowing full well it could still be any number of things…I’m trying really hard to stay positive, but especially after a long day at work, I’m finding it hard…got home from work at 5pm and went straight into bed…dragged myself out to meet up with my running club, thinking it might be nice to see people, but instead of running I am sat here typing this…and not feeling much like being sociable…
vent over. Thanks for listening…
I do think it’s hell waiting for an appointment to be told one of 3 things, that you have MS, that you might have MS, or that you don’t have MS. In many ways, none of these results is a good thing. Sometimes people just want the appointment to come and be told yes it is MS, just so they can stop worrying. Because either of the other options won’t put an end to worry.
What you can do of course is some research on the path to an MS diagnosis. Just so you feel a bit better informed. Have a look at A-Z of MS | MS Trust The MS Trust has a lot of information on nearly every aspect of MS including symptoms, diagnosis, treatment and more.
Another thing is to start writing down what happened and when. Include symptoms, when they started, if they’ve completely cleared or whether there’s anything that’s stayed with you. It may feel like you are becoming a bit obsessive about it, but sometimes we just need to get our minds clear. Have your preparation for the appointment done then you can concentrate on putting the worry out of your head. Having it all on paper means you don’t have to remember everything. A sort of external storage in order that you can then just get on with life.
Hopefully the time will pass quickly.
You’re totally right sue - the uncertainty of it all is devastating. Although from what I’ve been reading about MS it seems to be a disease full of uncertainties. I’m just hoping I can get some answers or at least a clear indication of what’s going on. I can’t help but think the likely outcome of my appt in March will be they refer me for more tests and so ill be back to waiting…it seems never ending.
I went to see my GP yesterday for the first time since I was referred for my stroke assessment. She was perfectly pleasant but quite open about not being in a position to provide any answers. I ended up not telling her about various issues only because I got the sense it would be a pointless exercise. But I do have an ever growing list to take to the neuro in March, including recent and old ‘symptoms’ I can recall over the past yr or so.
I’ve found this forum and the MS Trust website really helpful. It’s partially nice hearing other people’s experiences. Sometimes I find myself thinking ‘I can’t possibly have ms’ but then other times I’m convinced it can’t be anything but. Your posts in particular, Sue, are so well written and informative!
It’s been 5 weeks since the MRI revealed my lesions, and just another 6 weeks (and a few days) until I see the neuro! tic toc, tic toc…