I haven’t been diagnosed with ms but i have been ill for 14 yrs and was told i had m.e/cfs. I had bad vertigo 2 years ago and had another brain mri which showed a few lesions. I saw a neurologist who then gave me a lumbar puncture and evoke potential test ad both were negative. The neuro couldn’t diagnose me and just left me on his books incase i needed to see him again. I keep getting a sore area on my spine that feels bruised and it radiates into my neck and shoulder and i have a constant right side headache.I am exhausted all the time with it, I have saw an osteopath, a chiropractor etc who all say my right side feels tight and locked but nothings helping. I am worrying that it could be a spinal lesion because i have never had a spinal mri done,but reading online these aren’t typical signs of a lesion on the spine. I am sick of not having a proper diagnosis and do alot of research and lyme disease always comes up too. (similar symptoms) I have read lyme disease can cause brain scan abnormalities. I know if i suggest to my gp a test for lyme they will just rubbish the idea. Any advice?

So does this not sound like an ms problem?

Lesions themselves are painless. You cannot feel a spinal cord lesion - in fact, you cannot feel any lesion.

So a pain in your back does not mean that is where a lesion must be.

The symptoms/effects of a lesion are often very remote from the site of a lesion itself. For example, I had a spinal cord lesion at chest level - the symptom was numb feet! Altered sensation in the lower extremities and/or difficulty walking are common symptoms of a spinal cord lesion, but the lesion itself does not feel sore, so you cannot really tell anything from having a sore back. I never felt anything untoward in my chest area at all, even though that’s where the lesion was - it did, however, interfere with signals from my feet to my brain,and that’s why my feet went numb.

If you have been investigated for MS, you’ve probably already been tested for Lyme disease. I was - automatically.

Perhaps you would find your lack of diagnosis easier to come to terms with if you understood why your neuro feels MS doesn’t fit, and is unable to diagnose? Obviously the normal LP and evoked potentials didn’t help. They can’t prove you don’t have MS, but they didn’t provide any evidence for, either.

What have the brain lesions been explained as? It isn’t “normal” to have brain lesions, at any age, but they could be from other causes than MS. Is there something about how they look that makes them not MS-like? Or is it just that there’s no proof there’s ever been more than one occurrence? That is a common reason why MS-like conditions cannot be diagnosed as MS - simply no proof it was anything other than a one-off.


I asked the neuro when he was doing the lumbar puncture if he was testing for Lyme and he said no so it’s always in the back of my mind a possibility. The neuro gave no explaination what else they could be with. I know you shouldn’t google but i do and Lyme always comes up . Also when i saw an immunologist he said people with m.e/cfs can have abnormal brain scans too.I just get frustrated after 14yrs and still not having any answers really.

If it was me I’d ask for another MRI to ascertain if you have acquired more lesions. Among other things dissemination in time is needed to diagnose MS. I asume you did not have a contrast scan (injected with dye) when it was done?

I had a positive Lyme test 7 years ago. I only got it 5 years after the original tick bite so the antibiotic treatment came late. Often I think my symptoms might yet turn out to be Lyme related. I don’t have a definitive diagnosis, but I’ve been told “probable MS”. Lyme is not really recognised in this country as a chronic illness. Even if you get a positive test you would get 4 weeks antibiotics, then if you still have symptoms they will in all likelihood say it can’t be Lyme as that was treated by the antibiotic. In fact there is a lot of evidence for chronic Lyme persisting after treatment:

After years of fighting for ANY diagnosis, I sometimes think if they say it’s MS, I will take that because it’s better than having no answer. Then I worry it’s the wrong answer. Because if it’s Lyme Disease I would like more antibiotic treatment so I might even get better - or at least not get worse. Today I was told they’re not going to treat my probable MS, but just see me again in 6 months or so. I’m gutted. I had hoped my “probable” diagnosis would change something.

For me it’s been 9 years, for you 14. My heart goes out to you. I hope we both get answers.