Firstly I just want to highlight that I haven’t been diagnosed with MS (yet)…I have had an appointment with a neurologist but I am still waiting for an MRI appointment 4 weeks on…
I just wanted to reach out because I am so frustrated and feel a bit lost…
I started displaying symptoms about a year ago, dizziness and blurred vision, then early this year I got Optic Neuritis. When lockdown happened, I started having issues with walking, and after a certain amount of time I would be dragging my feet along the floor or feeling that my legs were going to give way.
As I commute into London it was deemed unsafe for me to travel to work and I have now been at home for 2 months and whereby a lot of my symptoms have improved, I feel like I have hit the wall with the walking, and I am still in pain and struggle to get to sleep because of the pins and needles in my hands and feet.
I have been tempted so many times to just go to A&E to get an MRI…but I like to think that the NHS will help me…but there seems to be no urgency…and when I mentioned MS to the neurologist said it was “unlikely”. I felt like screaming. I used to go to the gym 3 times a week and now I can’t walk any distance without a stick…!!! I’m 37! When I asked what else it could be he said “something on the migraine scale…?” which didn’t reassure me at all.
So now I wait…but it is a real mental struggle when you don’t know what’s wrong and it seems like no one is in a rush to help you.
I just wondered if other people had experienced this…whether anything I am saying is ringing any bells with anyone…or whether there is any advice on what I do next.
I’m afraid that the diagnosis procedure is a test of your patience.
the NHS is under so much pressure but every member of staff that i have seen at Salford Royal have been wonderful.
However this is a nationwide problem so please take this time to plan for your next appointment.
It helps to write down your symptoms as a timeline.
your first symptom and when it started.
did it get worse or ease off.
continue like this until you have covered all of your symptoms.
write down any doctors you have seen, include their names addresses and phone numbers.
talk about the deterioration in your mobility because you could be offered physiotherapy.
your notes can be left with the neuro but keep a copy for yourself.
if possible try to have a trusted friend/relative accompany you because no matter how well you prepare for the face to face consultation, sometimes the words just vanish when you need them.
this friend can write notes of what was said which is invaluable.
yeah Wardy, it has been ringing bells and has brought back memories of my own diagnosis in 2008.
at your appointment ask what tests they will conduct - usually MRI. VEP (Visually Evoked Responses), LP (Lumbar Puncture) and maybe more.
Hope this helps and at least you have something constructive to get on with.
Hi wardy Am still waiting for first neuro appt so feel your frustration. Its terrifying and exhausting waiting but seems fairly routine as far as the systen goes. Covid of course hasnt helped. Ive been couple years ago for seizure-esqu issues before these current and new symptoms and was told migraine too. If migraine…then where’s treatment for that Waiting seems commonplace but hang on in there! Can you phone Dept and chase them up- as you are obviously "live’ in the system?
COVID has certainly slowed things down, understandably…I had to wait nearly 8 weeks for a phone appointment with the neurologist and then he saw me 2 weeks later and I cant fault the staff at the hospital…they were amazing considering the very difficult circumstances they are working in.
I have a VEP appointment booked in 3 weeks time so waiting for the MRI…I considered calling but for some reason I keep thinking I should wait 6 weeks…for some obscure reason I odnt want to be a pain! Ha ha
I just want to feel better for work really…I have only had a couple of sick days in 11 years so this is completely out of my comfort zone…I have never had to get a Drs certificate or anything so I just feel a bit lost.
I just wish someone would tell me if there is anything I can do or take to feel better…patience is not my strong point!
All sounds very familiar I’m afraid. I think they just like to explore every possible alternative first and then if MS is the only card left on the table so to speak, that’s when you’ll finally get diagnosed.
I was originally reassured it didn’t sound like MS (even though it ticked all the standard boxes) and that it would all be anxiety. Further down the line there was talk of migraines. Now there’s just talk of MS and I still haven’t been diagnosed and am waiting to go through lumbar puncture and blood tests results at my next appointment which should confirm it.
One thing my neurologist said which stood out to me was that they don’t read too much info specific symptoms, but more the pattern of how they come and go. So it will make little difference to the diagnosis process whether it’s tingling/vision/mobility/fatigue etc. So having certain symptoms will neither speed things up diagnostically or slow it down. Which is obviously hugely frustrating for anyone whose initial symptoms have a significant impact on their day to day life.
Hoping for an alternative explanation for you, there are many conditions that cause neurological symptoms so keep reminding yourself of that. Sending love xx
Hi Wardy, hello hun. I know the angst of waiting for treatment and a diagnosis.
My story is quite unusual and I wont bore you with the details.
I began with mobility problems and pain. I saw neuros every 6 months and as much as PPMS was suspected, they were reluctant to diagnose me, because several MRIs, LPs and other tests all came back normal.
Things are moving for you now that you have a VEP booked. The other tests will follow. If it does turn out to be MS, then maybe a good DMD will be offered. If it is all due to migrais (?) then I hope a suitable plan will be achieved for that.
I am sorry that you are having such a worrying time. And you’re right: once they’ve assured themselves that you aren’t at death’s door, any sense of urgency tends to evaporate, but for the best of reasons, when you think about it. I wouldn’t bother with A&E unless something new and frightening happens and it actually is an emergency: you would likely be sent away with a flea in your ear, given that you have an MRI in the diary anyway.
As for what ails, I wouldn’t necessarily try to read too much into what a medic says it might or might not be when pressed to offer an opinion before those results are in. Whatever you might think about the modern reliance on lab tests at the expense of old-fashioned clinical exam, that’s just the way of the world these days. If the MRI shows something, then they’ll start paying real attention.
I hope you get some answers and some reassurance soon. Please try to be patient. There is no medical condition that is helped by chronic anxiety, I’m afraid. I am sorry that life is being so difficult just now. Most of us on here have been there, and it’s no fun whatsoever.
Hi Wardy, I was in a similar place 5 years ago. Different symptoms but same frustration at the lack of urgency. My NHS neurologist actually dismissed the deferral that the GP sent saying he didn’t need to see me, so I paid to go private and ended up seeing the same bloody guy! I also paid for my first round of scans and then when they identified a problem, I was moved back over to the NHS. It probably cost me around £1200 (may be more now) but it was worth it just to get things moving, for my own sanity as much as anything. Sounds like you’re already in the system so the circumstances are different but just saying it’s an option to consider if you continue to experience delays. If you do pursue it, make sure you consult a respected neuro I am surprised how much this makes a difference. Good luck
