Hi had my first neuro appointment earlier this months and consultatant mentioned that MS was a possibility and they needed to rule out spinal cord compression. I’m 40 and have upper motor neuron signs in my legs. hospital did bloods & EPs within a few days of the initial appointment and a full spine & head MRI we’re fine yesterday. Finally, got my follow up neurologist appointment through on the hospital app today. It’s not until mid October. I can only hope that’s because they didn’t find anything bad in the tests. But it’s a long time to wait. I assume they’d contact me sooner if they discovered lesions or any other serious issues. Or am I reading too much into the longer wait to have my results discussed? How long did you wait after Scans etc to hear.
They are heavily overworked, so the time could be due to that. If they can delay some people, they will do! As the results from your MRI scans sound to be clear, your appointment may not be considered urgent from a medical point of view, (though the wait is psychologically hard and in an ideal world would be soon after the results are obtained). They may think it makes sense for them to see how or if things change over a few months before they see you again. But it would be good for them to have just said that, if that is the case. It is only a sentence, and would make things much easier for the patient. The ‘wait and see’ approach is often taken if they can’t reach a diagnosis. They may consider that having told you that your MRI scan is fine that you have had the results, and that is all you need to know for the moment. That your mind is now ‘at rest’! As we all know, it isn’t if we don’t have answers.
I had to wait for a long time - 8 months, for discussion of my first MRI scan. After the latest MRI scan they’ve neither dismissed me nor given me a follow up appointment. That was 4 months ago. I haven’t a clue what happens next. I don’t think they have anything of use to offer me anyway, so I’ve decided to not chase them up. I’m now rather more intrigued to see what happens if I don’t follow up! I suspect I will be quietly dropped. I’ve no diagnosis - they have said they think it is something rare and without a name …
Sorry you had such a long wait. It’s hard to have some odd/upsetting symptoms without having clarity. I just wish I knew the actual results of the tests I had. But I’ve not been given them. So it’s a long time to wait just to get the results, let alone discuss them. I know from their pov someone who may not have any bad tests/scan results wouldn’t be top of their list of course. But not knowing anything is hard.
I don’t want to be a party pooper, but do prepare yourself for the “long haul” with regards to getting a diagnosis.
I’m 2 years, 5 MRI scans, a lumbar puncture (last month) and genetic blood tests (this month) in, and still no diagnosis!
I’m sorry. That’s a long time. I guess there’s nothing to do but sit and wait. As hard as that is. I’m just finding the stress of all this uncertainty very difficult to cope with.
Yes, the stress of waiting, and waiting again and again at each and every stage is very difficult to cope with. Try to make sure you regularly do healthy things that you really enjoy, as that seems to be one of the best ways to manage the stress.
From your previous posts it looks as if you’ve been waiting for answers since 2014 … And sorry, I wrongly interpreted your saying the MRI was fine as to mean the results, not the actual experience of having the MRI. My mistake.
Since Covid threw the first of its many spanners in the works, things have gone from bad to atrocious in many parts of the country. I am sorry that you are having to wait for so long.
Ok, so got a letter this morning by app. Not entirely good news. Brain seems ok. I’ve some very small non-inflammatory lesions that are probably within the norm. They saw a lesion in my neck but only from one angle & some minor issues at thoracic spine. So back I go for these sections. This time with contrast. I hate MRIs so much. But even more not knowing anything.
I do not even know now what is better: knowing or not knowing.
My symptoms properly kicked in last year October and been diagnosed this july, because all MRI scans - brain, spine and something else- showed leasons. Had scans in april, got a letter with diagnosis in july. Still waiting to see MS specialist or nurse.
Doctor said, if scans show something he would get in touch straight away, so months passing were giving me hope that it might be “an easy fix”.
Also will depend where you are. I have started the “process” in London and got appointment there for September (so a year wait to just see a neurologist whi would refer to MRI). Moved to Gloucestershire in February and seen doctor in March and got MRI in April, diagnosed in july.
Part of me still wishes i would not know…
2 years for me. Then a “diagnosis” of Functional Neurological Disorder, then effectively discharged with no treatment plan (or even any information about the diagnosis)