Had a rough year with health issues, depression, anxiety. Dizzyness, sickness, spinning, fatigue head feeling like cotton wool…Past few months had blurred vision, memory problems, stiffness in my arms, fingers and legs…Been off work since Nov 2011…Has lots of tests, adudio tests get the results next week. MRI showed Demyelination. Just been told this is non specific.
I asked what does that mean, she said Have a chat with your GP…Has anyone been left like this : - (
Jan
hi, been left in and out of diagnoses for 14 yrs. Hope your wait is a lot less than mine hun.
luv Pollx
Hi Poll, When you started to have symptoms what were they, and were the GP’s helpful? I feel I am going mad, do I go back to work? Everyday is a battle, I just dont know what to do.
Jan
Hi Jan,
I know it is frustrating after waiting so long and feeling so crap to not get a definite answer from your MRI but an MRI is actually not the great diagnostic tool that many people think it is. It is incredibly helpful and important but there is no single thing that can diagnose MS.
Who was it that said that the MRI was non-specific and to see your GP? And given that you are getting the results of all your other tests next week I am assuming you are seeing your neuro then? I hope so because it is only your neuro who can give you answers about your MRI.
All that the “non-specific” means is that the radiographer who has read your film has noted changes in the white matter that appear consistent with demyelination. But as he isn’t a neurologist he can’t say what CAUSED the demyelination, just that it appears to be there. There are actually many conditions that can cause white blobs to appear on an MRI. Some are as benign as signs of aging in older people to indications of a history of severe migraine through to a whole range of other neurological illnesses.
So now it is up to your neurologist ( and NOT your GP) to take the MRI results and in conjunction with your history and symptoms and any clinical signs he has found on examining you, put the whole lot together to try and make the diagnosis. Sometimes there still isn’t enough information for a diagnosis to be made and so you enter the dreaded period known as Limbo land. You might need even more tests or enter the “Wait and see” zone.
It can be a frustrating period as you feel like sh*te physically coupled with the uncertainty of what is wrong with you. But as a wise neurologist once said to me, “If it is MS it will eventually show itself.” I was in Limbo land for 6 years before there was enough clear evidence for a definite diagnosis to be made rather than wallowing around with a probable MS tag around my neck.
Best of luck and I hope you get some definite answers from your neuro soon.
Belinda
Hi Belinda, It was my neuro who said it was non specfic, and just to wait and see…She told me to chat with my GP, my GP is ringing me 2moro…Limbo land is not a great place to be.
Jan
Hi Jan.
If you can get a copy of the radiologist’s report and post it on here, I will be better placed to explain exactly what was found.
In the meantime, can you tell me who said demyelination? This is because the word “non-specific” doesn’t normally get accompanied by “demyelination”. This is because non-specific basically means not pointing to a particular cause.
If the neuro definitely said “non-specific demyelination”, then (as Belinda said) it would mean that it is demyelination but they don’t know what caused it. There are several possible causes - so the neuro has to look at how things develop as well as the patient’s other test results and history to work out what’s going on. Perhaps there isn’t enough info at the moment to tell in your case?
Why not wait and see what your GP says? And ask for a copy of the radiologist’s report - you are entitled to a copy as it is on your medical record.
Karen x
Thank you Karen, My GP said Demyelination, thats why she refered me. The Neuro said Non specific, and wants to not see me. Having a telephone chat with GP 2moro…Just a worry as to what is causing me to feel like I do. Been off work nearly a yr, and still no forward.
Jan xx
I think you need to find out why the GP said demyelination - which probably means seeing the radiologist’s report.
If the report said demyelination, then a second opinion may be a good idea. If it didn’t, then your GP has jumped the gun and a second opinion may go the same way as the first.
Have you had every blood test that your GP can think of? For example, B12 deficiency can cause symptoms that are very similar to progressive MS and it can cause lesions on MRI.
It sounds like your GP has some explaining to do!
Kx
Are you sure your GP didn’t refer you to the neuro re: query demyelination? And then the MRI results came back non-specific? That is a not uncommon course of events. Which does mean you go into limbo and only go back to the neuro in the event of another definite neurological event occurring. If that was to happen then another MRI would be done and if there were then changes evident on it consistent with MS AND if the neurological event was also consistent with MS you may then be diagnosed as having MS. It is without doubt one of the most frustrating diagnostic processes out there.
But do take heart from the fact that while your neurological signs and MRI results are fairly non-conclusive it does mean that nothing too severe is occurring in your brain. I know you feel terrible but nothing catastrophic is occurring. Trust me, if and when something serious starts to manifest itself, it will be glaringly obvious to the neuro and you will not be discharged and will probably receive a diagnosis at that point.
B
Hi When I had my MRI, I waited 3 weeks to see my GP regarding the results.When I went into see her the first thing she said was " Have you received your letter?, and its not good news, found Demyelination of the white matter, which could be MS…Need to see a Neuro.
Jan xx
Hi Jan,
No disrespect to your GP but how dare she??? Only a neuro can make that call. As I explained in my first reply to you white blobs on an MRI are just white blobs and only a neuro can interpret them in conjunction with your neurological signs, your history and your symptoms.
If your neuro said they are non-specific it means that combined with your neuro exam and history and current symptoms and other test results there is not not enough evidence at present to make any diagnosis. Let alone one of MS.
If things worsen or if you develop new symptoms in time your GP would need to refer you back to see the neuro and as I said it can be a frustrating time as you wait and see. But if you are in the early stages of MS (and let’s hope you aren’t) in time it will reveal itself. Mean time, try not to worry. Enjoy yourself knowing that whatever is going on it is not so serious that it is a diagnosable disease at present and get on with your life 
Belinda
Thanks Belinda, I am just fed up I would really like to work again, but not in a Nursery. Each day is different some good some bad. Always in pain with my heavy arms and legs. Will love to be active like I use to be…
Jan x
Hello , my recent MRI findings brain scan there are approximately 10 focal t2 flair Hyperin tensities in the subcortical cerebral white matter which are non specific??? What does this mean ?? What should I do please help I do have lupus and don’t know what to do with this MRI scan 
dr said it was nothing to worry about