Brain Scan “normal”

[Clarkie477]

So I just got my Brain Scan results and they have marked them as “normal” which is great news but now I’m thinking why am I getting neurological symptoms and they’re not showing up on the scan as I thought you got them because the Myelin was damaged and this would show in a scan?

[nano2]

I really don’t know. We are waiting for my Daughters 2nd Brain Scan result. 1st one revealed loss of volume on the left temporal lobe. Changed Consultant who wasn’t in agreement with first scan said he couldn’t see anything on it so ordered another.

[Nackapan in reply to nano2]

I also had 3 neurologists disagreeing . So I've now got the images on a CD for my next appointment with a neuro opthalmologist . Rather thdn thd radiologists report. They want the originals.

Mind actually stated on report white lesions infkzmation t2 scattered? All scary fir a non neurologist. Gp wouldn't comment that scared me.

Best to have another to compare and she must keep very still for a clear picture. Theh told me nearly over and u must have sighed as moved and had tohave some repeats!!

[nano2 in reply to Nackapan]

They do put the fear of god into you sometimes. She still has memory problems in fact while she was active and still in work this was one of her first symptoms looking back. Hopefully hear this week.

[Nackapan in reply to nano2]

Perhaps she needs another referral for hee memory problems. Hope that happens after her mri scan. Akso that her memory returns mord with treatment . I've lost over a year. Weird feeling at times but mind is definitely clearer 16m in

[Sleepybunny]

Hi,

If you haven't already, I suggest you try to get access to report/letter/copy of scan images that specialist will have sent to GP.

It's not uncommon for older people to have some white matter lesions in the brain and if the amount of lesions are within normal range for your age group they may say results are normal.

Article on B12 deficiency and effects on brain

ncbi.nlm.nih.gov/pmc/articl...

The article uses scientific terms and I struggled to understand some of it. It has pictures of brain and spine scans.

[Clarkie477 in reply to Sleepybunny]

Thank you. I will try to get hold of the scans

[nano2 in reply to Sleepybunny]

Yes daughter got her brain scan image and report after doing a SARS I think it’s called and she’ll be requesting the next one as well.

[Brookey in reply to Sleepybunny]

Hi Sleepybunny,

Thank you for the link. I found it very interesting (the words I understand!!). So many of the symptoms mentioned, I suffer with or have had diagnosed ie optic atrophy being one. I have an appointment with a neurological ophthalmologist in April, I have cerebral palsy. I was confused, why I had been referred for this appointment. Its hard to believe B12 definitely has so much to answer for.

[Sleepybunny in reply to Brookey]

Hi Brookey,

I hope your appointment is helpful but be warned that many specialists as well as GPs don't always have a good understanding of B12 deficiency.

[Brookey in reply to Sleepybunny]

Thank you, is there someone body/organisations other than PAS who do take it seriously? Does this mean that should I need meds etc that I will need to arrange it all mysel? It's quite unpleasant to be treated like a time waster by the medical profession!!! Over the past weeks and months I am suffering stomach pain etc, could this be connected too? I appreciate your help.

[Dons1903]

Hi Clarkie477. I’m exactly like you. I had a brain scan 5 months ago and it came back as normal. The Neuro symptoms I was getting was horrendous. I was also paranoid they were wrong as every time I got results back from the dr for ferritin etc they told me it was normal....even tho they were very low so I didn’t trust them. Anyway....after 7 weeks of SI the Neuro symptoms are easing so that’s starting to put my mind at rest that the scan was correct. Hopefully the right injection pattern for you helps.

[Clarkie477 in reply to Dons1903]

I’m sure the scan is fine. I just thought if you had neurological symptoms it would show up. Someone else has told me that it’s the spine that shows issues if you have neurological problems. Not sure if that’s correct or not.

[Dons1903 in reply to Clarkie477]

I was expecting the worst after my scan. I thought I definitely had something as the migraines and headaches were almost daily so I prepared myself for bad news. And would have been happy, in a strange way as I would have had an answer. My Neuro symptoms had been ongoing for 10 years or so but my dr kept saying it was fine! My brain and spine were normal(wife would disagree 😀) injections are helping. If you are still worried ask to see the results...you are entitled to them. Unfortunately this illness can play havoc with your body as new symptoms appear......that then affects the mind!

[Nicksi in reply to Dons1903]

I've gone through the same journey as you. And it becomes so frustrating when no one believes that SI is the only relief. Right now I'm still getting sent to more neurologists and hematologists because they still aren't sure about PAS...

[Medz50 in reply to Dons1903]

Hi what do you mean by 7 weeks of sl was just wondering what u had for the neurological symptoms to ease thanks

[Dons1903 in reply to Medz50]

Hi Medz50. I am self injecting Hydroxocobalamin into the muscle every 2 days due to pernicious anemia. I’m taking folic acid and iron on top. I am at the low end scale for ferritin. I had bad osteoarthritis of the hands and was on horrible anti malaria drugs and anti inflammatories which gave me worse symptoms so I stopped them all and started self injecting more regular and as of now my hands are like I’ve never had osteoarthritis!!!! I have read that low ferritin can do this!!! I’ve just gone onto every 3 days to see if I can space out injections more. Everyone is different in what they need. If symptoms still keep away I’ll go to 4 days. If they return I’ll drop back to 3 days. It’s trial and error. As I said earlier....I had Neuro symptoms for many years and after 7 weeks I’m finally easing on tingling burning numbness so something is working.

[Bellabab]

It does not take much damage to get neurological symptoms so probably not visible on a scan - could be that you have very little or no damage. The answer is to have intramuscular B12 injections every other day till no further improvement is obtained - then maintenance doses every other month.

[scnuke]

A standard MRI of the brain mainly looks at physical anatomy and is not particularly helpful when looking for metabolic changes. Less often used or available, an FMRI (functional) technique can be used. It is much more useful when trying to evaluate metabolic function of the brain. B12 neurological irregularities and symptoms are most often functional in nature and not likely to show any abnormalities on a standard MRI, with or without contrast. FMRI is gaining more acceptance in the medical community, but access to the technology may not be widespread, and radiologists and neurologists may not be properly educated or experienced. Radiology is one of my fields of training.