Update - The wait continues

I hate being in this limbo land, the constant self doubt and battling the unknown. Today I had an appointment with my GP to get my results for my full spine MRI (without contrast), the result? Normal. Is it bad I felt disappointed by this? Frustrated? I just wanted a diagnosis, a confirmation that the symptoms I’m feeling are real, that I’m not lying or imagining them. At first I was concerned about my symptoms but now that concern has turned to worry as they are only getting worse, my left arm felt limb and weak for days to the point I’d avoid using it. In the 20 months of experiencing on and off symptoms it is the first time that my symptoms have actually stopped me performing activities or slowed me down.

Thankfully, my GP is very empathetic and is taking me seriously. Both herself and another previous GP have confirmed after performing reflex and strength tests that my left side is weaker than my right. She’s asked that I go to the opticians to have my eyes tested again as it’s been over a year since my last test (I have normal eye site but occasional blurred vision, assumed to do with migraines) to get a clearer picture of behind my eyes. She’s also referring me to a Neurologist and will attempt to make a urgent referral but may not be accepted. She hasn’t suggested MS and I haven’t raised my concerns because I don’t want to throw around assumptions.

I’m wondering if all you lovely people can help! I have a few questions -

She said the Neurologist may request a brain MRI, if it is MS can lesions be on your brain but not on your spine? How long are Neurologist appointments, is it just 10 minutes like a GP appointment or longer? Will the Neurologist perform tests like a Nerve Conduction test there and then?

Best wishes all,

hi em

the neuro will probably perform some physical tests such as test your reflexes.

also will probably want to hear in your own words what has been going on.

lesions on the brain will show up on a brain MRI.

i’d say that neuro appointments are longer than gp appointments but that will depend on the hospital and how busy it is.

i hope that you don’t have to wait long for an appointment.

try not to get stressed (during the most stressful period of your life) because it just makes your symptoms worse.

it’s a good habit to get into, avoiding stress, rejecting stress, telling stress to stay the f… away from you.

in fact i don’t have to work at it any more.

i avoid it, i reject it, i tell it to stay the f… away from me and if it persists i ignore it!

keep well and stay calm.

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Hi Emlouise,

I feel for you. I am going through exactly the same. And a similar time frame!

To answer your questions - from my experience neurologists’ appointments are longer. Mine were around and hour.

MS should show on MRI. Most people have lesions in their brain from what I know, but sometimes they can be only in the spine. If your one side is permanently weaker that does sound a bit like a permanent nerve damage.

They perform various physical tests during neuro’s appointment ( I mean, they should!) but unless you’ve got permanent damage these tests can give negative results (like in my case). I have a foot drop - my swimming instructor noticed that my right foot was floppy and I just can’t keep it in shape. And that happens every time I swim. i don’t even need to exert myself to much for this to happen. But when I had my neuro exam the foot responded normally. The same with my right hand - I keep dropping things, my writing is funny and hand feels weak and heavy but not every day so when I had my physical exam (on a good day) it all went ok.

I tried to explain it to my nero but of course he didn’t listen. I’m not sure what proof to bring him any more. I might bring a projector and video of my foot while swimming so as he can believe me… haha.

The same goes with Raynauld syndrome - my fingers go white but of course on the day when I had my appointment they were ok. At least now I took some pictures so as he can see what actually happens.

I did hear from my friend ( who is a neurology student) that often the symptoms come and go and that is why unless there is more damage to your body, or permanent damage it is difficult to catch the disease. Especially at the early stages.

Anyhow, it is good that you keep perusing things and your GP is helpful.

All the best and good luck.

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Hi emlouise

Yes, a neurological appointment will take longer than a GP appointment. You’d normally go through your history of what has brought you to the neurologist. Then I’d expect a neurologist to do a physical exam, testing all your reflexes, the various signs which will show what your eyes are doing, what you feet do when scratched on the soles (toes pointing one way could mean MS, the other way not - I can never remember which way is the MS way!)

Then the neuro would talk through what they might be considering (hopefully) and maybe refer you for more tests, I’d expect a brain MRI, possibly a lumbar puncture (although that’s not necessary for an MS diagnosis, it’s just more pieces of a puzzle) and maybe a Visual Evoked Potentials test.

Hopefully you won’t have too long to wait. Once the referral has been sent by your GP, I’d give it a week or 10 days, then phone the appointments team and see that they have the referral and give you a rough idea of the waiting list time.

It is very frustrating to be at this point still experiencing symptoms and not yet to even be in the system - limbo is hell. All you can really do, is tell yourself that it will take time, even once you get the neurologists appointment, you’ll then have to wait for more tests, and then the results. Attempt to put it out of your mind. What will be will be and all that.

Best of luck.



Hi @Ssssue @Sarra @Catwomencarole58,

Thank you all for your replies, I really appreciate it.

I went to get my eyes checked last Saturday, I thought I’d take the GP’s advice and do all I can to help speed up the process. The Optician wasn’t happy with how my left pupil was responding to light, her colleague agreed. As a result she has now also sent a letter to the hospital and my GP. I’ve now received an appointment for a Neurologist on the 8th of August (urgent referral was accepted) but it’s at the Eye Hospital and in the small print says “Neuro Ophthalmology”. This threw me a little as my main concern is the weakness and pain in my arms and legs. Do you think this appointment will differ a lot from a normal neurology appointment, or just focus entirely on my eyes? It also states on the letter I shouldn’t drive to the appointment, I’ve been told this might be due to drops or dye. Has anyone had this before? It’s made me feel a little bit anxious, I’m a whimp when it comes to eye drops!

Best wishes,

Hi believe this appointment will be just for your eyes as I work within an eye department. As for the drops these are to dilate your pupils to look at the back of the eye. If it is sunny make sure you have sun glasses with you. Up close will be blurry these effects will last around 4 to 6 hours. Good look with everything and the ophthalmologist can refer to a neurologist if needed. Helen

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Hi, you are right it will be just to exam the eyes! I had a letter this morning for an appointment for this Thursday with a Neurologist at the general hospital. I called and asked if I had to attend both and they confirmed they are different, separate neurology appointments. Thanks for the sunglasses tip, will most likely be sunny with the weather getting warm again!

Best wishes,