Abnormal brain MRI scans - brain lesions

nicegirl

Has anyone ever had brain MRI scans only they keep appearing abnormal, and lesions present in the brain? I suffer with a number of symptoms, and the doctors cannot diagnose what it is I have exactly.
Moderators, I have NOT looking for medical advice at all, but wondering if anyone has gone through this, and if they ever got a diagnosis as to what it was they had
I would appreciate anyone who could tell me their story, thanks in advance

fend

Have you spoken to a neuro surgeon? Or a specialist in this area?
I'd make it my business to make an appointment with a recommended one of the above and find out what the hell is going on.

nicegirl

fend wrote: »

Have you spoken to a neuro surgeon? Or a specialist in this area?
I'd make it my business to make an appointment with a recommended one of the above and find out what the hell is going on.

Thanks for replying. I am constantly dealing with neurologists, who have examined my MRI scans, and the scans keep appearing abnormal over the past few years, but they cannot give me any diagnosis, and therefore cannot treat me, or the symptoms I continuously suffer from. I don't know what to do anymore, its very upsetting

whackball

nicegirl wrote: »

Thanks for replying. I am constantly dealing with neurologists, who have examined my MRI scans, and the scans keep appearing abnormal over the past few years, but they cannot give me any diagnosis, and therefore cannot treat me, or the symptoms I continuously suffer from. I don't know what to do anymore, its very upsetting

My wife has been going through the exact same thing for the last 18 months. Have been to see who we have been told is the top neurologist 3 times in the last year alone and he can not diagnos what her condition is. He has went through her symptoms and we feel he is guessing when giving here different courses of treatment.

We seen him just before xmas and where hoping for some form of diagnosis be it good, bad or indifferent, but we are back to square one again. Very annoying and worrying as well as costly as it is €200 + every time we see him.

nicegirl

whackball wrote: »

My wife has been going through the exact same thing for the last 18 months. Have been to see who we have been told is the top neurologist 3 times in the last year alone and he can not diagnos what her condition is. He has went through her symptoms and we feel he is guessing when giving here different courses of treatment.

We seen him just before xmas and where hoping for some form of diagnosis be it good, bad or indifferent, but we are back to square one again. Very annoying and worrying as well as costly as it is €200 + every time we see him.

I am a young enough girl, and this has taken a hold of my life for the past few years. I am now possibly thinking about looking into brain surgery, or something else, don't know what to do. I hope your wife gets a diagnosis, I know well how frustrating it is.
If anyone has gone through this over a number of years, and got a diagnosis, let us know, how you got a diagnosis....did you go abroad, get brain surgery, or see a really really good neurologist, or maybe even speak to a neuro surgeon? Again, thanks in advance

emzolita

hi nicegirl, i was talkin to you a while ago! have they not mentioned Epilepsy anymore to you?
the word "lesion" is real scary, my aunty had the lesions on her MRI, and hers turned out to be epilepsy, but my MRI's were grand, but exactly the same type! its weird.

i wouldnt rush into surgery, I had 2 parts of my brain removed and im left with 17% reduced memory from it. (plus it didnt even work) it will take a while, but they will find tablets for you that will work! (it took 6years for me)

byhookorbycrook

Can you share your symptoms?I wouldn't have surgery unless I knew exactly what for and what outcome was being sought.

Puppies

You situation sounds a little like mine, although i am ten years on. I had an abnormal scan 10 years ago, and have had two biopsys both inconclusive. I was being treated by a Neurosurgeon. I also got a second opinion from the brain tumor clinic in Boston, who all agreed i should be scanned every 6 months, and watched. I had increasing headaches in the past while, and my neurosurgeon decided to repeat the biopsy (AGAIN). The operation has been cancelled twice, to date. So with my pain increasing and having so many side effects from steroids i decided to pay for my treatment in the UK.
I went to Kings International in London last week, and was seen by Sanj Bassi, Neurosurgeon, who was the most frank straight forward consultant i have ever met. He said under no circumstances would he preform another biopsy on me. Even if they got a conclusive result my treatment would remain the same, and the risk of surgery did not outway the benefit. My pain is most likely coming from all the painkillers i'm on, and i should try something like accupuncture. Of course he will have an MRI scan done every 6 months to keep an eye on everything. But much, much better than another biopsy.

So my advice to you is get a second opinion ALWAYS. I know we are in a recession and money is tight but i would really recommend going to the UK. Of course you have flights etc., It was £235 to see the doc but i have to say well, well worth it.

Please PM me if you want any further info/advice.

DrIndy

Generally speaking - as a doctor who has faced this a number of times myself - it is not only patients who get very frustrated when you cannot get a diagnosis.

We've admitted patients for weeks giving them heaps and heaps of tests all to come up inconclusive. HOWEVER in doing so, also eliminated so much nasty stuff which it also could have been. The patient is not impressed when they are discharged non-diagnosed to go to a clinic, but at least we eliminated cancer etc.... at the time. Scans, x-rays, blood tests, history, examination all help to point towards something - very few tests are ever truly conclusive on their own. Sometimes findings on these are red herrings and its the doctors judgement which puts them all together.

We had a chap's pancreas biopsied umpteen number of times as the scans looked like cancer but the biopsies looked benign (did the needle miss?). In the end, we got a sliver of a sample and showed it was a very rare form of extremely slow growing cancer. He was happy, but this took absolute bloody ages!

So, on behalf of the doctors of the world, I feel for you when you feel frustrated, we are probably even more frustrated than you are. I hope it gets sorted out - every now and then its something random which changes that gives the clue. Also so long as you are being followed up, should something happen, it will be spotted.

nicegirl

Thank you so much to everyone for their replies, I really appreciate it. I will be in touch with you in the nest few days. You have given me a sense of hope for the future, and for a diagnosis, thanks again

cltt97

the wife of a friend of mine was diagnosed with MS not so long ago. She had lesions in her brain, tingling in her legs and the vision in one of her eyes went funny, she had to go through a lot to get diagnosed...

_Whimsical_

DrIndy wrote: »

Generally speaking - as a doctor who has faced this a number of times myself - it is not only patients who get very frustrated when you cannot get a diagnosis.

We've admitted patients for weeks giving them heaps and heaps of tests all to come up inconclusive. HOWEVER in doing so, also eliminated so much nasty stuff which it also could have been. The patient is not impressed when they are discharged non-diagnosed to go to a clinic, but at least we eliminated cancer etc.... at the time. Scans, x-rays, blood tests, history, examination all help to point towards something - very few tests are ever truly conclusive on their own. Sometimes findings on these are red herrings and its the doctors judgement which puts them all together.

We had a chap's pancreas biopsied umpteen number of times as the scans looked like cancer but the biopsies looked benign (did the needle miss?). In the end, we got a sliver of a sample and showed it was a very rare form of extremely slow growing cancer. He was happy, but this took absolute bloody ages!

So, on behalf of the doctors of the world, I feel for you when you feel frustrated, we are probably even more frustrated than you are. I hope it gets sorted out - every now and then its something random which changes that gives the clue. Also so long as you are being followed up, should something happen, it will be spotted.

Excellent post Dr Indy. Having been in a similar position to the people in this thread I think that it's very heartening to hear that the distress and frustration these kind of situations cause the patient is understood by (at least some) doctors. I think from my own experience when you leave hospital with no conclusive answers you feel very abandoned by medicine-kind and like you are on your own with your problem.It's a terrifying feeling.It's good and reassuring to get an insight from the other side of the bedside consultation.

Thanks for taking the time to join in.You sound like a real asset to medicine.

livemusic4life

cltt97 wrote: »

the wife of a friend of mine was diagnosed with MS not so long ago. She had lesions in her brain, tingling in her legs and the vision in one of her eyes went funny, she had to go through a lot to get diagnosed...

My uncle was the same it took years really to get diagnosed.
I think the only thing that you can do is to keep annoying the medical staff. Eventually someone will figure it out.

goeast

If you would be interested to get another opinion abroad, I might be able to help you. Last year, I was having worrying episodes of dizziness over a period of few months. I went to Lithuania to get investigated. I went through MRI and series of other detailed investigations (carotid US, echocardiography, eye check, etc). I was lucky to get diagnosed with Vertigo and I'm ok now.
But if I wanted all those investigations to be done in Ireland, it woud have been very costly and time consuming. Over 4 days I had scheduled appointments with all the specialists I had to see and it didn't cost a fortune. The most important was I knew what's happening with me.
I'm not trying to push my service, just letting you know there's allways are options for you. Good luck and I wish u to get well soon!

LegacyUser

I empathise with anyone who has been diagnosed with brain lesions, yet received no firm diagnosis on cause or treatment. I was admitted to hospital after an incident at my computer - had horizontal nystagmus (eyes darting side to side and hard to focus on words on screen) plus sensation that one half of my brain had turned to lead and shut down. Later that day local hospital CAT scan that showed lesions in right hemisphere and was sent off to metro hopsital with a suspected high grade astrocytoma. Craniotomy followed 6 days later, and to everyone's surprise the pathology showed no malignancy.
Had lots of blood tests and spinal tap in metro hospital that eliminated a wide range of possibilities. There were conflicting medical views...on the one hand the neuro team were considering lymphoma or MS, on that other the disease specialists considered the lesions were caused by a yet undiagnosed pathogen at work. Waited 3 weeks for results to come back from a lab that came back inconclusive on pathogen theory. Since the incident and in prep for craniotomy had several MRIs.. post op MRI (one week later) showed no change that pleased everyone...the next one 2 weeks later showed changes. In view of earlier inconclusive lab results....It was recommended I have a brain biopsy to get a good sample to allow for a definite diagnosis. Two weeks later...those results all came back negative too - no evidence of pathogens!!. Then the thinking moved to the possibility of cerebral vasculitis and I was sent off to the opthamologist to have my eyes checked...that all came back healthy and normal. At the same time an autoimmune condition was considered...those bloodtests have all come back negative! I was fortunate...in the hands of excellent surgeons...no negative side effects from surgery and I've been 100% well since the first incident. Just living with the "not knowing". It's been a month since my pre biopsy op MRI so I've been advised another will be necessary, plus all the inconclusive pathogen theory results to be discussed with the neuro team again.