Hello im new and could you help


12yrs ago i was diagnosed with relapse remiting ms through evoke potentials, MRI 's have showm no lesions but inflamation and over the years ruling out all other disease and monitoring the change and progression they agreeded ms. So i finally got an appointment to see a ms speacilist as i had enough and this week he went agaisnt four other leading neurologist one is my epileptic and the best and said no you have a rare Cns disease which shows no lesions on the brain or spine but does show severe inflamation of both brain and spine which i do have. So he as to go away and find a speacilist list all my ailments and take it from there. I have long list of problems rayhnaurds and epilepsy are to along with asthma and prolapse disc disease. So i am here to see if anyone can help if ataxia is the cause as im getting no were and progression is rapid. I have weakness mainly right side, memory is poor i get lost easy so my hubby stay's close by, cramp and spasm, chest pain the list goes. If you understand secondary ms thats me. I look forward to see what you think


Hi Hazy, I was devastated when I got my classification of Sproatic SCA exspecially after being misdiagnosed (one was MS) for so many years.So much so I did a huge lifestyle change physical, mental, spiritual and emotional because I wanted to try rebalance my brain and body as much as I could. I gave up refined sugar and flours along with preservitives etc and it seemed to help my inflamation in my spine and also my body inclusing my brain alot. I'm not sure it would help you but to me it was worth mentioning this to you. It's not easy to do but it is doable. It can't hurt right? :0)

Because it is dealing with only foods people are very skeptical that something this easy where we have control could possibly help us.I try to use foods as my meds as much as possible. But knowing that, there is a place for meds. My thoughts are that if our cells in our body are so healthy maybe they can help some of the disfuntion in our body even if it's a small amount. I'm thinking everything do have control over adds up.

Hi Hazy - sorry I cant help but just wanted to say hello. So sorry to hear of your problems .. it's all too familiar to hear this sort of vague diagnosis whether neurological, dermatological, rheumatic or whatever.... one cant help clinging on to the hope that they will eventually diagnose something for which there is treatment at least.

My very best wishes to you, Patsy :)

hi there hazey pleased to hear from you i survived a rare childhooh cancer its the treatment thats left me like i have too numerous ailments very much like yours chat soon jay and lynn xxxx


I was originally thought to have MS but many years later eventually diagnosed with a very rare combination of Ataxia & Dystonia. At first I seemed to be losing control of my arms and thought I was going to end up where I'd be unable to use them and seemed to be getting more and more involuntary movement in them.

I stumbled quite by accident on the fact that exercise actually helps my Dystonia symptoms and has reduced them over the last year with 'Forced Exercise' which is also used with Parkinsons patients. It hasn't worked for all the symptoms but I have better control than I had this time last year even though I still need wheelchair.

Do you actually have Ataxia as one of your symptoms? Strengthening your core muscles may help with balance (sitting or standing) if you are able to exercise. It also sounds like you need to work on your right side.

Hi, welcome to LWA :-)

The general rule for Multiple Sclerosis is that it causes obvious localised lesions seen on the brain scan, supported by Lumbar Puncture tests which show immune reaction to myelin etc.

So, what you describe doesn't sound quite like MS, but maybe more like the Doctors have called it "MS" because they don't actually know what it is. As others have said, I've also been told I've got "MS", or am just "assumed to have MS", without ever getting any tests, not even a brainscan. If it isn't MS, then I don't think most Doctors would know what it was, as most aren't trained in Neurology beyond the bare basics. When actual Neurologists examine me, they disagree its MS, but don't know what it could possibly be. In fact, it's likely to be either metabolic or an SCA, with an outside chance of an autoimmune condition or cerebellar hernia with neck problems etc.

For that reason, if the new Doctor is suggesting tests for other conditions to pin down what it might actually be, maybe "go with the flow" and see where it leads. You haven't got a lot to lose have you? And just maybe they'll be able to put a definite name on it.

Meanwhile, generalised inflammation of the brain with seizures occurs in a number of conditions. Without knowing more about your symptoms and history it's difficult to say which one or type to get tested for. For instance:

Have you had eyesight problems, and if so, are they more like Optic Neuritis (MS), Retinitis Pigmentosa (NARP, SCA), or a slow loss of eyesight due to eye nerve atrophy (SCA, LHON, many others)?

If the inflammation and damage is localised to one half of the brain, it could be Rasmussen's Encephalitis.

If it's whole brain inflammation, and came on in late childhood or teenage, then conditions like SSPE (inability to suppress the Measles virus) or others are possible. Adult-onset conditions include SPNE and Leigh Disease (SNEM, or else one of the 26 conditions under "Leigh Syndrome").

It there is evidence of missing white brain matter, a Leukoencephalopathy (such as Leigh Syndrome related ones, or MELAS).

If eyes, pancreas, kidneys, skin or other parts of the body are also involved, then maybe it's a systemic autoimmune condition like Lupus (SLE) or possibly Sjogren's Syndrome.

Ultimately though, it's often "much of a muchness" which actual condition any of us have got, as so many conditions overlap in symptoms and treatments, so the rest often still comes down to emotional support and practical steps to cope with whatever disabilities one might be stuck with.....

As Patsy said, at the end of the day, the purpose of an accurate diagnosis is to get the treatments which have proven to work best for that condition, and where possible, a cure, or at least something to stop it progressing. Since in most cases of inflammatory conditions, it's going to be Steroids with or without antibiotics/anti-virals, and then treatments to control and relieve specific symptoms. For metabolic problems, there's diet and supplements. So, I agree - if you're getting worse despite any treatment you're currently getting - try the new Doc with new ideas. You might yet get lucky :-)


hi i was dignoised with ms 20 years ago and all sorts of problems that the drs could not find a course for they told me and for a while i beleived it was all stress related, then 5 years ago i started going down hill and in 2009 i was told i had sca6 not good news but at long last i know its not all in my mind good luck gill

Hi to all

i do have opthalmopgiea were my eyes dont follow each other, what i never said was all my test results lumbar ,mri and bloods and evokes are missing the departments can't find them either so although they have written notes there useless without the test and results. So im stuck and my disease named fred is wrecking me and the pain is horrendous espeacilly the cramps and spasm.