I ahve been reading a number of posts and I am taken aback at the similarilties as to my problems. I have been on a bit of a rollercoaster over the past year. A large lesion was found on my brain incidentally in January, they suspected a low grade glioma brain tumour. Another 2 small lesions have appeared as to which I was told they were nothing and just small blobs on the scan. I have a multitude of symptoms, no one will listen to me. The neurologist just basically makes me out to be a hypacondriac, says its just stress as I have been diagnosed with a brain tumour but these symptoms are nothing to do with a brain tumour. He is basically saying they dont exist, have been prescribed nothing. In my opinion its MS I have but cannot get anyone to listen to me. Since the neurologist wrote on my records, stress, everyone else just looks at that and says the same and doesn’t listen.
I have ‘wobbly eyes’ worse when I am tired or in a bright environment, cant read when I am like this, my eyes move from side to side, rapidly. I have chest and back pain, burning and takes my breath away. Headaches, eye pain. My arms are heavy and weak, I have foot and bone pain down my left side, at times I have a pain on the top of my foot like someone is holding a match to it. I have a weird numb/tingling sensation in my left arm. I have pins and needles in my hands, my thumbs and the odd finger twitches, sometimes for a whole day. The tiredness is unbearable, I am exhausted just walking up the stairs and completly breathless. I am constantly running to the toilet. I am forgetful, I have problems with my eyes, blurring, double vision and my eyesight gets worse, then better and so on. I have vertigo at times, developed travel sickness, have saw large balls of fire in my periferal vision. I also have problems with my spacial awareness and knock things down constantly. My problems get worse when I am hot, I seem to have a severe intolerance to heat now, sweating buckets and it makes me so ill.
I have just had another MRI scan, dont know the results yet as to whether the large lesion has grown or whether there is new lesions.
If anyone would like to shed some light on my symptoms if there are similar to what you are going through or whether it is in fact just all in my head and I am clutching at straws. I am at the end of my tether.
No you definitely have a Neurological complaint probably caused by your lesion/s. Unfortunately this is what we call limboland; a place where you know something’s wrong but no learned person can or will give it a diagnosis.
Poor loves; these Neurologist are really impotent; MS cause and cure unknown. On saying that some tend to invent complaints like conversion disorder or cluster headaches in the meantime to attempt to pacify the patient with their symptoms.
One complaint I will mention as it does involve headaches; misdiagnosed as MS and can be easily treated something called Hughes Syndrome; http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/736 A blood test will see if you have APS Antibodies.
Ask GP to get a second opinion; or you could go private for your first appointment; cost about £200. Obviously not the same Neuro; you do not need a referral but it would be handy to have copies of your MRI. You can purchase them from the Neuro’s secretary. Any further tests; drugs; hospitalisation have on the NHS; this is legal since the Law Lords made a ruling about 5 years ago.
My advice would be to wait and see what the radiologist says about the latest MRI.
Large MS lesions can be confused with gliomas so it is feasible that it is a lesion and not a tumour, but I would hope that the radiologist and neuro would have considered that already (but wouldn’t be all that surprised if they haven’t!).
If you aren’t happy with the next report and conclusion then the question to ask is: “Is it possible that the large area of high signal on my MRI is a tumefactive demyelinating lesion and not a tumour?” (Please don’t freak out if you google tumefactive lesions - most people with a single tumefactive lesion do WELL and if yours was a sign of a nastier type of MS, you would be very much worse than you are!) If you aren’t happy with their response, then you should ask for a second opinion.
I do think you need to ask for further investigation into your symptoms even if you are happy with their assurance that it is not demyelination. One thing that springs to mind as a possible cause is migraine - it can cause small lesions and a whole load of neurological symptoms just like you describe (with and without with head pain).
Whatever you do, stay calm, objective and firm with your neuro & GP. Sure, you’re stressed, who wouldn’t be, but there is more going on than they think and you would like some help!
Thanks both of you for taking the time to reply to my post, I will wait for my scan results and go from there. There were 2 additional small lesions on my previous scan that had appeared since my first scan in January.
Its the waiting that I find hard, my initial diagnosis was a bit of a fiasco, I was told that I had a large mass on my brain and told I would see a neurosurgeon, waited and waited, 4 months only being told this, no support nothing. In the end I went private, paid £300 to see the neurosurgeon who said it was a suspected brain tumour (glioma). But as the symptoms progress and they appear to be either ms or a disorder mimicking that, I just want some answers and finally find out what this is and get treatment for it. Fed up of not being believed.
It seems that you have good cause for a complaint here. A suspected brain tumour and you wait 4 months!!!
Outrageous
Having one or two (even a few) small lesions is fairly common and are often discarded as normal, but they have been caused by something, they’re new and you have symptoms: seems to me that there’s some explaining to be done by the neuro team.
Thanks for your reply. I too believe my dealings with the NHS have been outrageous. I reckon I was bumped off the waiting list to reduce the waiting times, when I contacted the neuro team in that first few months I was constantly lied to, saying the team were looking at my records/scans and after this is done I will then go on a 12 week waiting list, at this point I had waited over 3 months which didnt count in this waiting time. I was furous, this is when I decided to go private to actually get some answers, the neurosurgeon had never seen my scan and said anything that is relating to the brain is usually seen quickly and was puzzled when he heard about what had happened. They suspect a glioma but cannot tell for certain if it is or at what grade until they biopsy it but said they wont, they will watch and wait as a biopsy is likely to cause a stroke as its in the motor strip, its 2cm x 2.5cm. In January there was another small lesion which is barely there now, but 2 other appeared on my last scan in July. I have been getting numerous symptoms that another neurologist put down to stress, since then they all just look at my records, take his word for it and also put it down to stress. (I would say that I actually have coped with this extremely well, havent had any time off work, I have 2 jobs and also studying at college). Even with the numerous symptoms they were going to change the scans (even though there were 2 more lesions found) to yearly!! I said there is no way I will wait this long considering they do not know for certain what this is, I said I will have 3 monthly scans and this can change at any time without warning. The more that I read about ms and ms type disorders the more sense this makes that this is the area that they should be looking at and testing me for, it is too much of a coincidence that I have a large number of the same symptoms.
Thanks for all your help. I take my hat off to evryone who is currently going battling ms or facing the uncertainty and worry of a possible diagnosis.
Seems to me that you need a different team in charge. It’s possible that the two new lesions were missed in the first scan (small lesions can be invisible simply because of head position and settings) and they are nothing to worry about, but parsimony suggests that they all have one underlying cause and the possibilities need to be investigated properly. Stress does not cause lesions. So if those small lesions really were new, they were caused by something other than stress. If the lesions are old and the scanner missed them the first time, then its possible that your symptoms are stress-related (perfectly normal reaction to finding what might be a brain tumour!). If they are new and/or this latest scan shows more, there is something going on. So I would wait and see what this report says, but be prepared to get very assertive so you get a full and thorough investigation. Re investigating MS: the main test is MRI. The other main tests are lumbar puncture and evoked potentials, but these are not wholly diagnostic - plenty of people with MS have normal results so there is no guarantee that having these tests would move you any further forward. Let us know what the next report says. Kx
Thanks again for your response. I have had 4 MRI scans now, the large lesion/tumour was found in the first one along with a small faint lesion in my frontal lobe(this one is barely visible now. The large lesion has been present on each one, in July a new lesion was found about 7mm in size and extemely bright in the right centre of my brain (generally where ms lesions are found) another lesion about 5mm in size was found in my left frontal lobe at this time too. When these new lesions appeared I was having severe symptoms at this time, pins and needles in left arm, extreme blurred vision and double vision, seeing large white balls of fire in my periferal vision, vertigo, weakness in my left arm, feelings I was going to collapse, sweating buckets constantly, pain in bones in left leg, chest pain and area of spleen, pick axe eye pain in left eye and headaches, breathlessness, fatigue. I saw my GP, when I was explaining my symptoms, she went balistic saying she has no time to go through all of the symptoms, said ‘this is just getting rediculous’ said ‘I will need to make another appointment’. She knew about the tumour/lesion on my brain at this point, I was gutted with her reaction. I walked out in tears. She knew she was out of order, phoned me at home to ask me to come in again, I took my husband this time, amazing how her attitude changed. She said that she had an important call to make and felt she ran out of time (I take it what I was discussing wasnt important!). But she did try to listen at that point, got my scan forward, unfortunately the hospital only brought it forward a week, but it was something, this was the one where the new lesions were found. Anyway will hear soon, hopefully what my new scan shows and will go from there. I just want some answers and hopefully some treatment, I doubt very much I will get that for some time.
The chances of a very bright 7mm lesion being missed in the first scan is almost nonexistent so I am confident that it was new (although I’d have to know about scan details to be 100% sure). I’m honestly shocked that they are sticking to a ‘wait and see’ strategy. Why no LP or evoked potentials? It won’t do any harm and it would provide very useful info - there are a lot of possible causes and info is what’s needed to differentiate them. Kx
