right occipital white matter focus of high flair signal

[xrds]

hi, been a long time since been on, but heres a quick over view. 3.5 years ago woke up paralised down right arm, totally numb hand with sharp pins and needles. about 3 months later my right leg went completely stiff with muscle spasms and numb right foot, again bad pins and needles. approx. 6 months later was diagnosed with trigeminal neuralgia. sometime in the last 12 months my memory has become shocking, I am forgetting peoples names whom I have known for years, cant keep concentration and extremely tired. 3 months ago lost vision in right eye, totally blurred vision and extreme pain. I have chronic headaches regularly, can no longer walk without walking stick as balance is gone and cant walk far without dragging my leg. Had a brain MRI 3 years ago, showed nothing. this week I had another one, says ;
:  There is a single high flair high T2 focus seen in the right occipital white matter, measuring 4x8mm in coronal section and 13x4mm.
:A diagnosis of demyelination cannot be confirmed on this criterion.
Any ideas what this means please

[xrds]

I can certainly understand giving up. I have had these problems for almost 4 years now, was told by one trainee neuro to get on a bike, go for a ride and feel better about myself. Little bit hard to ride a bike when you can not even walk properly let alone move leg for riding a bike. walked out so upset, thinking maybe this is in my head. But moods have nothing to do with my symptoms, I can be in the best of moods, happy, laughing, then wham, leg/foot gone and end up in bed for up to a week. So for over a year I have chosen to just accept what ever is happening and take it day by day on my own. My GP is amazing but until a severe memory issue recently he has said honestly my problems are beyond him and he helps as much as he can. This memory loss was extremely scary prompting my GP to further investigate himself. He has said our public health is in a bad state and I need better care, but unfortunately have had to wait for public system. Don't feel have a choice now but to pay private.
Thanks again for our advice xx

[karryon55]

Lol I certainly know what you mean about finding the right Neuro. I have only ever seen two in my life but the first one I hated from the moment I stepped in his office as to me he oozed arrogance and cockiness. I have spoken to some of my fellow MSers and some like him...some hate him so I guess it depends on personality & such.

I needed one with a bit of patience as I already have a lot of dx'd conditions to navigate around and this particular Neuro clearly did not have this kind of personality. I wanted to give up after I saw him but when you have so many neurological symptoms going on I had to try again & this time I hit jackpot and I found a gem.

My MRI referral is usually written "pre and post GAD as per MS protocol" and I'm not sure if yours was or not. The Neuro will no doubt order the appropriate MRI and further testing when you go anyway so I would wait & see.

Take Care,

Karry.

[xrds]

Thanks Karry, I have spoken to 2 people with MS that see the same neuro, 1 loves him, the other hates him. that makes it a little harder to decide on him lol. But will definatly be paying private this time. the referral for mri did say quiery intracranial lesion & MS and was T2 & T1 without GAD.

[karryon55]

Hi there fellow Aussie!

I recommend you contact your local MS Society and ask for a list of Neurologists that have an interest in MS and treat patients with MS. I know it's hard to get into the public system with a wait of 2 years in some instances to see a Neuro via a GP referral. I chose to go privately to a Neuro who has lots of patients with MS but it does cost a lot.

I one day will try to get into our public system but I've heard it's a bit of a mess right now so I will continue to pay for now. Where I am there are 4 public Neuros that specialise in MS and this is the same in any state as far as I know. Often you can see them privately which means you will be seen quicker.

I am not sure if your MRI was actually done to MS protocol which involves thinner slices of the brain and pre and post GAD. As immisceo has mentioned there is a lot more to dxing MS and lots of testing to exclude mimics so it can be a lengthy process. If you find a Neuro that has patients with MS and they are willing to do tests and keep an eye on you then stick with them.

Take Care,

Karry.

[xrds]

Hi, thanks for your input. Unfortunately here in South Aussie we don't have MS specialist, and it can take up to a year to get into a neurologist. So unfortunately, in my view, they do not get to know me as a patient and see regularly how I am. The last neurologist I saw 15mths ago said I have all the signs of MS, but said it can take years for something to show up to prove this. So not sure if this is what he is waiting for.

[immisceo]

Hi there.

An MS diagnosis is usually based based on many things, primarily the clinical exam. This is taken in conjunction with patient history, lab results, imaging, etc. There's a lot in your history, but your MRI isn't a home run. Demyelination can occur in a few different diseases, but 'evidence of demyelination' is typically seen (though not always) in the MRI report of someone with MS.

The radiologist is stating that your MRI doesn't confirm this process is taking place. However, radiologists do not diagnose. They simply report. It is up to your neurologist (preferably an MS specialist) to see the big picture with all of your data and determine a diagnosis and/or future course of action.