Had appointment with Neuro today who says nothing wrong after years and years of all the usual symptoms, but he has agreed that I can have an MRI. I did ask for an MRI last year but he said 'no, I’m not prepared to expose you to radiation!). I believe that I have PPMS (though didn’t voice this to him) so asked for a full spine and head MRI but he has only agreed to head and neck MRI and I don’t know the strength of the machine at Cannock.
If this comes back as negative would it be worth asking to go private for a full spine MRI at a higher strength machine?
Neuro says he can’t understand why I want one even though he does acknowledge that bowel incontinence, vaginal numbness and loss of feeling in right leg must be caused by something, along with all the other odd symptoms.
Any help re MRI much appreciated; I feel like it was an achievement today to even get agreement for this.
Yep, there’s definitely no radiation involved in MRI - stooooooopid neuro! (Where/when did he get his degree?!)
Well done for getting him to agree to an MRI of your brain and neck at least. If nothing shows up then you could certainly opt for a private scan, but make sure that you get your money’s worth. Some private centres and private healthcare providers use exactly the same scanners as the NHS (or even worse!) and don’t do a whole lot better with the scan settings either. If you end up going privately, you need a 3T scanner and you need a maximum of 3mm slices in the brain and (ideally) 3mm axial slices in the spine. Hopefully it won’t come to that though.
I agree with Rebecca btw - I’d want a new neuro too!
Hi Dianne, did you see a neuro at Cannock? If so I think I know who that would be and from my experience I would definitely ask for a different one or a transfer to Stoke (if you are close enough)
I am no expert but sounds like you have a rubbish neuro. MRI scans are 100% safe from what I read and you can have thousands in a lifetime with no harm being done to your health.
Also why should you have to put up with bowel incontinence, NOONE should have to put up with that - makes me cross!!!
Stamp your feet… and get a different neuro if you can!
Also mention to him (or the new neuro) you are thinking MS. I did and it changed the neuro’s route of conversation, it was almost like he was relieved I mentioned it before him as he could then talk about my chances of me having MS without him being the one to bring it up first!!! (hope that makes sense).
I agree with the others - well done you for persuading your neuro to agree to an mri but quite frankly after all this time and years of symptoms clearly something is amiss so…yep, I think I’d want a different neuro for sure!
As for his comment about ‘not wanting to expose you to radiation’…well, words fail me!!
Hopefully the scan will shed a bit more light on things for you - it’s noisy & cold but you can also ask to listen to some music whilst you’re laying there. This may help take your mind off it if you’re a bit nervous
Not sure if I’m using this site correctly in the way I’m replying, as I wanted to reply to you all individually, but am still confused since the site changed its layout, please forgive me!
Thanks for all your replies. That’s certainly interesting about no radiation in MRIs - am seriously doubting his competence now, although I was told by my rheumatologist that he was the best. Hmm. By the way they have tried to blame everything on RA but the arthritis is now in remission so I made sure he noted that yesterday. I live in Lichfield and saw this neuro at Tamworth but could easily get to Stoke - presumably there is a good one there as I will go private next time. Neuro yesterday said that if MRI shows nothing he will have to pass me to another Neuro anyway as he cannot do anymore for me.
Interesting about mentioning MS first though, as he has always mentioned MS but only as a vague passing comment - it really is almost like he wants me to say it first. He can’t understand why I want an MRI as he doesn’t know what he’s looking for - apparently.
And yes the bowel incontinence is crippling my life, it’s like my secret shame that I’ve tried to hide for last five years but has gradually got worse and worse to the point where it’s happening at work and it’s only a matter of time before its exposed. I know that when that happens I will not be able to face going back as I’m already experiencing some belittling and humiliation due to the memory and word problems etc. In fact I was told yesterday that I have to consider redundancy as they want me to work full-time but I can’t (currently do 30 hours since 2007 when symptoms seriously increased). They just have no perception or understanding whatsoever of how bad the fatigue is. Yesterday was a bad day with the interview at work and then the neuro in the afternoon! I’m now off today with stress, stressed to the ceiling with it all.
By the way, thanks Karen for replying to me a couple of days ago - I had a question about mebeverine - sorry didn’t round to saying thanks at the time, I am truly grateful for all your help.
The actual MRI experience doesn’t sound too bad. thanks again for all your responses. I love this site, it’s become like a life line to me.
Hi Dianne, I suggested Stoke as it is better for MS but as you aren’t diagnosed, perhaps they wouldn’t (sorry about that!) but if the are investigating MS, it is better than Cannock or Stafford as it is the prescribing centre for DMDs and where there are more MS nurses, although the MS nurse at Stafford is great (just the one) the last MRI I had was done at the private hospital in Newcastle, don’t know why as they have MRI at Stoke and that is where I usually go, maybe it was too busy or machine broken, still NHS though, so no bills! and better waiting room. The consultant I see (Stoke) does consult at the private hospital as well.
I have Beneden insurance and got a head MRI in December. It cost £450 for that area alone. My Nhs consultant has ordered a full MRI of 4 areas so it can’t be an issue as they are close together. Hope that helps.