Hi Chrissie, I’m sorry to hear about your problems and hope you and your daughter are doing ok. I know it sounds odd but I’m more worried about getting a negative result, after 3years of struggling with this illness and no treatment it will be a relief to finally have a name for it. Yes Ssue certainly knows what she’s talking about and is always there to offer advice and support. I’ll make an appointment for 2 weeks time to see my gp as it was him who pushed for the spine mri. Thanks for your reply.
Your GP might be a bit awkward because he cannot diagnose you with MS, that has to be a neurologist. Suspect if it shows anything lesion-wise, he’ll refer to ‘abnormalities’ - that’s exactly what my GP said when I saw him about something else, before my neuro appointment.
However, if there is something then his secretary can probably get your neuro appointment chased up and brought forward! When mine was a bit of a wait, I called my surgery and explained the chain of events, GP totally understood I was worried - it had been the spinal unit that had ordered the MRI and referred me back to my surgery as they would refer me to neurology. My point is, armed with my spinal MRI my surgery got me in to see neuro within a month… I think it was literally 3-4 weeks later.
It went like this, sorry for waffle but hope you get my point:
I saw an Osteopath after a fall in December, she wrote to my surgery in the new year suggesting I needed an MRI. So my GP referred me to the spinal unit, I waited and had an appointment with them… they wrote to me confirming an MRI was required… waited then had the MRI appointment. Then it went quiet, after calling the spinal unit on numerous occasions eventually, they told me I was being referred to my surgery. When I called my surgery, by some minor miracle the receptionist looked on the NHS site and found my MRI, she apologised that the spinal unit hadn’t been more helpful and promised me a call back, not necessarily that day but a call back regardless. A GP called me back about an hour later to confirm I was being referred to neurology. I was diagnosed before the end on April, so actually pretty quick all in. Shame my Osteo (not NHS) couldn’t have been in charge of my tests as that could easily have reduced my wait for diagnosis by at least two months! I spoke with her after diagnosis, she said it’d been her worst fear for me
Good luck but hope you don’t need luck
Sonia x
Hi Sonia, that all sounds very complicated. My route so far has been more straightforward, it’s just the long waits to see the neuro that is frustrating. I think he was suspecting parkinsons disease on my first appointment so during the physical examination he did he was looking more at my arm/hand movements. My main physical problem has been my legs. After all the tests I’ve had so far I’m assuming that a lot of things have been ruled out but I don’t know what they are. If the spine mri shows something up, what will be the next step I wonder?
I don’t know enough medical info to even guess what’s next for you but hopefully your GP will be a good sounding board. I just wanted to let you know that he might not be able to tell you other than confirming normal results.
Good luck getting to the bottom of it.
Sonia x
Hello
I should think it now depends on who ordered the spinal MRI. If it was the GP, all they would be able to do is either confirm that the radiologists report shows no lesions, demyelinating or otherwise, or as Sonia said, say there are ‘abnormalities’ and refer you back to the neurologist, hopefully as an urgent appointment.
Either way, the GP would not only not be able to diagnose MS, they wouldn’t be able to diagnose anything else neurological either.
If your spinal MRI is clear, the GP would be able to refer you elsewhere, maybe to a rheumatologist, or maybe do some other blood tests to rule out other disorders.
However, if the spinal MRI was ordered by your neurologist, then the results would probably come from him/her. The GP again would only be able to say if there was nothing abnormal showing up and/or that you’ll need to hear what the neurologist thinks.
It truly is a miserable time, to be stuck in this ‘limbo’ that seems everlasting. I can believe that ultimately just to be given an MS diagnosis would seem like a positive result.
I do hope your GP is able to give some light at the end of a very long tunnel, but don’t hold your breath for definitive answers at your GP appointment, you may not get them.
Do come back to the forum to let us know what happens.
Sue
Thank you so much for your support, my gp wrote to the neurologist asking if I could have the spine mri but he did tell me he might not be willing to allow it. So I’m assuming it was the neurologist who referred me for it. After the first scans I had it was my gp who told me that they were clear. I’m really hoping for some answers /treatment soon because this thing is getting worse quite quickly now and is seriously affecting my work. If the mri shows something up would the next step be a lumbar puncture or eye tests? My eyesight is getting rather weird but not like the classic symptoms of optic neuritis. Thanks again, I really appreciate your replies.
I would expect that if the spinal MRI showed that you have lesions on the spine, the neurologist would refer you for more tests, possibly as you say a lumbar puncture and/or visual evoked potentials.
But, this is certainly a case of putting the cart before the horse. It’s very much a case of ‘if’ there are spinal lesions.
It’s an absolute nightmare time, waiting and waiting for appointments, tests, results, appointments, etc, etc, ad infinitum.
All any of us can suggest is that being patient is the only thing possible. Being worried isn’t essentially going to change anything except increase your anxiety.
Sue
Thanks sue, yes it’s definitely a nightmare. I’m not expecting my gp to diagnose me with anything but if he can tell me if the scan is clear or not that’ll be something. I don’t want to wait several more months to find out from the neuro. I’ll let you know what my gp says next week.
Hello again, hope everyone is doing OK. I’ve just come back from the gp hoping to hear the results of the mri. Alas they’ve not come back yet. How long does it normally take for results to get to the gp? It’s been over 2 weeks since the scan, am I being impatient? He said the results will probably sit on desks for a few weeks before anyone looks at them. Is that typical? Thanks
My gp has just rung me and told me the mri was clear. I’m actually disappointed with the result because the symptoms I’m having point to ms and they’ve ruled out so many other things. I don’t know what will happen next, I’m really struggling to work because of fatigue and the problems with my legs are getting pretty bad now. On top of this somebody pinched my work car last night and set fire to it! Talk about being kicked when you’re down!
It’s hard being stuck in limbo, I hope your neuro is helpful…
Sonia x
Thanks Sonia, limbo is a bad place to be for all of us. My gp wants to see me asap to try to get to the bottom of it. I haven’t a lot of faith in the neuro unfortunately.
A lot of people find they’re a tricky breed. I’m glad your GP is looking out for you. Has your blood been checked for vit B deficiencies? I believe that can be an MS mimic. Good luck tho x
Oh, my foggy brain has just reminded me of transverse myelitis - a lot MS in my understanding but only spinal lesions. Might be worth asking about x
Thanks Sonia, I’ve just looked up transverse myelitis. It does sound very like what I’m experiencing. Wouldn’t that be seen on an mri though? I’ve had lots of blood tests and my vitamin levels are all OK apparently. Once again thank you for taking the time to reply. X
No worries, I might have missed a bit somewhere (brain-fog), yes it’d be lesions on spine x
I’m seeing my gp soon so I’ll ask him where we go from here. I’ve read some posts from people who’ve suffered for years with symptoms and negative results. Looks like I’m going to be in that category. Oh well that’s life.
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Hi, I’m reaching out my partner of 42years has PPMS like someone explained he’s like a light switch, it’s the moods I’m finding hard to cope with, the not speaking to me. They say mental abuse is worse than physical too true! To the point that I’m going to see my GP to see if there’s anything he can give me so that I can let it go over my head if I don’t I think I might walk out the door and not come back!
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Hello again, saw my gp today regarding the mri results. He said it’s good news it was clear but frustrating to have all these symptoms and still no name for what’s causing them . He did say that sometimes people can suffer from a condition for years with no answers and then eventually get a positive test result and then everything becomes clear. Has this happened to anyone else? He’s put me on gabapantin for the leg pain so hopefully that will help. I’m hoping it won’t make me drowsy because I drive for a living!
Being ‘in limbo’ before an MS diagnosis isn’t uncommon. At least your GP is on the ball good luck finding out what’s going on.
Sonia x