I had a lumbar mri last week l went private as 18 weeks waiting time to see neurologist on nhs. The private neurologist l saw a couple weeks ago said couldnt see any neurological involvement after initial examination and sent letter to my gp. So back to gp and asked if l could have mri of spine and neck she wouldnt sanction it as neuro had said he couldnt see a problem however she did sanction lumbar mri as problems are mainly in legs. Results came back showing a couple of protruding discs slight degeneration and some bone spurs nothing in contact with nerves. Im now going to have a brain and neck mri privately then im out of money. I cant wait over 18 weeks for nhs appointment. What do you think.
Hi again
I think you should save your money.
It sounds to me that you probably don’t have MS. And that is what the doctors you’ve seen so far have told you.
I just checked back on a previous post and you said you have an appointment in August with the MS specialist you saw privately recently. I suggest you write a timeline with exactly what symptoms you are thinking might be caused by MS. Write down what has happened, how long symptoms have lasted and whether anything has improved.
I remember that you have other autoimmune disorders which could be the cause of some of your symptoms. You also said that you suffer from anxiety. That does come across in your posts on this forum.
In my opinion, you should take your notes of what has happened that you ascribe to MS to your August appointment and try talking to the neurologist honestly about why you continue to believe it’s MS even though the neurological exam and the tests don’t support it.
I wish you all the best, and hope you can finally get a result that you are happy with.
Sue
1 Like
Thanks Sue l hope im not being a pest! I obviously dont want to have ms but my symptoms do relate to it and as l already have 3 autoimmune diseases its not unusual for more to follow. I will do as you suggest and keep a note of symptoms. I now have a weak voice but wont google!!
Hi Kingsnorth, you’ve had two scans and both of them are clear - I think that’s good news isn’t it? I wouldn’t put all your money into a third scan to be honest, but I can understand the anxiety, definitely.
Anne
I have only had one mri Anne and that was a private one l paid for on my lumbar spine which showed disc problems and degeneration as well as bone spurs but not affecting nerves. I havent had brain or neck mri’s they were the ones l was thinking of paying for.
Oh my apologies Kingsnorth, I read that wrongly sorry. I can understand you’re worried but if the consultant said they weren’t needed I think I would go with that to be honest. Or do you think they are wrong? Sorry this is all new to me
Anne
Anne l dont think ms can be disgnosed by a physical neurological examination l think you need a brain and neck mri or spinal tap. Although initial exam dismissed ms im still getting symptoms that havent gone away because neuro said he couldnt see anything. My worry is that if l do have it and it is rrms then l should be on dmds. My symptoms are there all the time so if ms could be ppms and l know no meds are available for that yet. It took 3 years for my diagnosis of lupus kept being told it was all in my mind and given antidepressants even though l wasnt depressed. I just feel l have to fight for my diagnosis so many times. I wont keep posting because l think im becoming a pest! But will update when or if l have a diagnosis. Thanks for listening x
Kingsnorth
​I don’t think you’re a pest. Having symptoms that the neurologist can’t detect doesn’t fill you with confidence, and that is clear from your posts.
The trouble is that if you do have MS, you’re not losing much by waiting till you see the neuro on the NHS in August. If he then refuses to recognise your symptoms as being in need of further investigation, that will be the point at which you start thinking about having another MRI that you pay for.
As you’ve already discovered, having an autoimmune disorder can take a very long time to diagnose. And being honest, if you were diagnosed with PPMS (as you previously said you suspected), waiting a couple of months isn’t going to change matters since there are no disease modifying drugs for PPMS.
Best of luck.
Sue
I know you are right Sue and l might wait. He said in his letter to gp copy to me “After examining me from a neurological point of view he can find no abnormalities” he also said that when he sees me on nhs he will repeat the mri and cervical MRI (l had that in 2015) just to put my mind at rest". The 2015 scan was done because l was getting icepick headaches. I will update you when l have some answers. Thanks for your support x