MRI questions

[Jane Clarke]

Hello, everyone: may I ask for your comments based on your collective experience? I have just had back the result of brain and upper spine MRI scans, which were only taken 6 months after a very acute onset. As far as I know, they are the absolute basic version, with no particular contrast or anything else. Apparently, they show no abnormalities.

I am rather confused: there is no consensus among many (!) articles, leaflets, etc I've found on various neurological sites, TM sites etc etc as to whether lesions are ALWAYS visible on MRI, only SOMETIMES visible, or invisible unless the MRI is done 'with contrast'; also, it's unclear as to whether any lesion may only be detected if the scans are done promptly after onset.

Can anyone out there help clarify this for me, please? My symptoms are 100% consistent with TM, and have not improved over the last 6 months (7 months now since onset) YET how on earth can I ever know?!

[George Dunham]

My MRI's were done with contrast at the Cleveland Clinic in 2004. Also I had a followup MRI five years later and the lesion was still visible. My lesion is at C3-C4. Hope this helps.

[Jane Clarke]

Thanks, George! Any fragment of information will help.

[declan ryan]

hello jane, in my experiance i had a 7 inch lession and it shrunk to half inch in a few weeks, and then dissapeared.only way to know is to get a good neuroligist to look at your case,gl and keep in touch...

[Jane Clarke]

That's interesting, thank you Declan. Did your symptoms also disappear??

[declan ryan]

hello jane,no still suffer with chronic pain...numbness,fatigue etc.bowel and bladder not so much .im on 3600mg of neurontin a day but even at that it just takes the edge of it ,thankfully im in the process of getting a neuro stimalator implanted.if your symptoms dont subside after 6 months iv been told its not likely to ,iv been told for me that its a progressive disease over time .realy hoping that this neurostimalator helps me as it change my life so fingers crossed.hope you can get some answers off your doctor ,or anything i can help you with.

Jane Clarke said:

That's interesting, thank you Declan. Did your symptoms also disappear??

[Jane Clarke]

Thanks Declan. I hope the neurostimulator helps, and will cross my fingers, too! As a matter of interest, where do you live, and how long did it take for you to be seen by a Neurologist? I live in London, England, which is not exactly out in the boondocks, yet owing to the suddenness of the onset, the local A&E (at one of the country's top teaching hospitals!!) had me attended by a Neurosurgeon. Naturally, nothing 'wrong' could be found within the ambit of that specialism. It took over 5 months and a referral by my GP even to get to be seen by a neurologist. She made such a botch of things that I asked my GP to refer me to a specialist Neurology hospital. What a shambles!!!! So I'm interested to learn how differently we are treated in different countries.

All good wishes,

Jane

[declan ryan]

hello jane,yeim from kildare and my first symptoms were numbness left leg then spread up my back and into my right leg ,then severe fatigue and pain,devoleped a limp and all the other shite that comes with it like feeling like i had severe flu that wasnt lifting,my local gp sent me for the wrong mri on the bottom of my back so i contacted the matter private and within 20 mins of a examination he sent me for an mri and found a 7 inch lesion inside my spinal cord ,about 4 weeks later he refered me to go to london queens hosiptal to prf. neil kitchen,literaly the best in europe.but the lesion had shrunk to half an inch and im still attending st.vincents in dublin constant mris,bloods,scans,and other crazy brain tests etc.thats the rough story,just wondering have you been told by your neuroligist that you have tm and whats your next step? are you on any meds?realy hope you can get some answers and stay positive your hopefully over the worst maybe next step is to deal with it and learning to live with the shite in front of us.get in touch

Jane Clarke said:

Thanks Declan. I hope the neurostimulator helps, and will cross my fingers, too! As a matter of interest, where do you live, and how long did it take for you to be seen by a Neurologist? I live in London, England, which is not exactly out in the boondocks, yet owing to the suddenness of the onset, the local A&E (at one of the country's top teaching hospitals!!) had me attended by a Neurosurgeon. Naturally, nothing 'wrong' could be found within the ambit of that specialism. It took over 5 months and a referral by my GP even to get to be seen by a neurologist. She made such a botch of things that I asked my GP to refer me to a specialist Neurology hospital. What a shambles!!!! So I'm interested to learn how differently we are treated in different countries.

All good wishes,

Jane

[Jane Clarke]

Hi Declan: the 'neurologist' who saw me at the Royal Free Hospital agreed that my symptoms are 100% consistent with TM (and with nothing else) yet referred me for MRI without contrast. Since she made such a pig's ear of her post-consultation report to my GP, I've asked him to refer me to Queens Square, to the National Neurology and Neursurgery Hospital. Is that where you were seen?? - if so, will find out how I can ensure I get to see this Prof. Kitchen. I note you had to 'go private' to get any sensible attention. Maybe that's the problem here: neurological shite (as you so aptly put it) takes too many NHS resources, so we get fobbed off. Also, middle-aged women are perceived as hysterical, hormone-crazed hags anyway. thanks for allowing me to sound off! Please feel free to return the compliment, and keep smiling anyway - if only through gritted teeth!

[cathaysa rodríguez]

Hello Jane,

I understand perfectly well how you feel.... I had 10 MRI done..... of all my parts of my body except my torax, which was where my lesions where. When they discovered the lesions, it had already passed 4 months of my second attack. On my first attack, doctors thought it was caused by stress because MRI from my brain and lower spine showed nothing wrong.

After 7 months of my second attack I had all my MRI done again, but this time with contrast and everything showed ok.

This means that lesions may not always appear. There are many things which are very difficult to know because diagnosis is very complycated. 

I wish you all the best, just try to be calmed.....as much as you can, because the only thing I am 100% sure is that nerves and stress are negative.

My best wishes,

Cathaysa.

[Jane Clarke]

Thank you so much Cathaysa (what a beautiful name you have!) for your information. May I ask, in the absence of MRI indications, upon what basis was your diagnosis made? - since, according to the little information we have available to us,  visible lesions on mRI are considered 'diagnostic'?'

PS where are you? I am in London, England.

Very best wishes,

Jane

[cathaysa rodríguez]

On my second attack, I couldn't walk and after 4 months living lying on a sofa... I decided to visit a neurologist who (thanks God) decided to make me a upper spine MRI (without contrast), and lesions showed up....But three months after that, he told me to get them done again but with contrast and this time everything showed ok... It is very difficult for me to understand how it did show up 4 months after the attack but disappear 3 months later after the show up, because I was still recovering.... and that also makes me think that maybe If I had done the torax MRI earlier, the lesions that would've shown up would have been different, I will never know.  

I am in Gran Canaria, Spain.

Best wishes,

Cathaysa.

Jane Clarke said:

Thank you so much Cathaysa (what a beautiful name you have!) for your information. May I ask, in the absence of MRI indications, upon what basis was your diagnosis made? - since, according to the little information we have available to us,  visible lesions on mRI are considered 'diagnostic'?'

PS where are you? I am in London, England.

Very best wishes,

Jane

[Britney Wells]

hey guys...i spent 3 weeks n n out of er rooms with MRIs...all they saw was a herniated disc n my lower back....finally a hospital saw it and diagnosed me...then 8 weeks later i had healed n previous region but had new lesions!! i have videos on youtube if it helps... ..