Forum

Advice please

Hi, any of you made it closer to diagnosis by having a 3T MRI? If so, I would like to hear about your experience. If you went private, will you please let me know the provider? I can’t really afford it… but this thing is killing me…

I had a brain scan in July at the National Hospital for Neurology and Neurosurgery. They do have 3T scanner but for some reason they did mine on 1.5T…there are two small subcortical hyperintensities, one in each frontal lobe. Neuro saying this is "within normal limits " and i do not have ms despite symptoms. I have them every day, not all of them but some and new ones appearing.

My GP referred me back. I’m still under the care of same neuro but on the day, a new doctor saw me. Basically he was implying that stress could drive the whole thing…and asked me how my childhood was! I was persistent so he asked me to bend my head forward and tell what i had felt. I felt tingling in my hand. Then finally he ordered a neck MRI. I asked if it was a possibility that that i do have ms but lesions just haven’ t shown up on the scan. He gave me wishy-washy answer but when kept asking finally he said it could be a remote possibility…

Guess this neck scan will be done on 1.5T too…i’m afraid it won’t get me closer to anything. I do not want an MS diagnosis, just want to know what this is. I heard a 3T scan pick up 30% more lesions that 1.5 that’s why considering that. Just not sure and also don’t know which provider to choose if decide to go head. The best I found does 3mm slices with 0.3mm gap. Can’t find one that does the scans with no gap. I read it’s recommended to have no gaps anywhere.

Oh dear, isn`t it maddening when we feel we need better answers! Have you asked why your scan cant be done on the higher MRI machine?

Even if no lesions are found, yet symptoms persist, surely you should continue to have regular appointments…maybe 6 monthly or annually.

I had tests over and over for many years and nothing was ever found on any of them…yet my mobility went downhill very quickly.

I was and still am being seen annually after 16 years!

PPMS was finally ruled out, after being mis-diagnosed with it for 11 years! Now they say I have Hereditary Spastic Paraplegia. But there is no proof of that either.

I could be tested specifically for HSP, but it takes months and I feel I have had enough tests and the stress which goes with them. Plus there is no cure for that either…just drugs to ease the symptoms.

Have you found out how expensive private MRIs are? I guess around a grand, eh?

Good luck hun.

pollx

I didn’t ask why 1.5. Only reason i know is cause i called the MRI dept and asked what tesla it was. The person i spoke to was like he never heard that question before and was a bit reluctant to tell. I didn’t ask him cause guess he couldn’t tell anyway. I read somewhere that they have 2 3T and 2 1.5T machines. One of the 3Ts is used for research and the others for diagnosis. Maybe it was just bad luck or the neuro ordered the MRI that way. But what i learnt is if i ask to many questions or come across well informed docs think i’m a hypochondriac! So i try to balance things and push only if necessary. For now the neck MRI is ordered, i felt that’s the best i could achieve . As first he didn’t even wanna consider any spine MRI. Would have been great to get the thoracic section too but neck is better than nothing.

Sorry to hear your story! :frowning: Doctors can’t know everything but after so many years they really should know what’s going on! I hope at least the drugs can help a bit.

MRIs cost between £800-1300. Brain, cervical and thoracic spine included. Price varies by location and quality of protocol. The best i found is £1300. If I knew it could definitely give me answers, i’d get the money as despite i’d need it for other things. But i’m desperate so…trouble is, of course, there’s no way to know before the scan if it’s worth going ahead or not. So still deciding what to do.