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How likely is it to have MS without oligoclonal bands?

So I have been having some pretty alarming symptoms. I had an MRI done, and the neurologist wanted me to get a lumbar puncture, because it was suspected I might have a demyelinating disease. Lumbar puncture showed no bands. I do apparently have some spots on my brain that are considered to be nonspecific.

I have read that most people that have MS have these bands, and I don't. The problem is, the symptoms I have aren't really similar to any other diseases that I have seen. The only thing that matches my symptoms is MS. Nothing else even comes close to explaining them. I have been tested for a whole lot of other things, and it's all come up negative. The only thing that I have had was an elevated ANA, but the subsequent tests didn't show antibodies for anything.

If I don't have MS, then I don't know what else I could possibly have. How likely is it that somebody could have MS without oligoclonal bands?
3 Responses
20620809 tn?1504362969
MS is beyond tricky to diagnose it seems.  I think lots of people want to say no, it's not that but in reality, all people are different.  "Most" is just that, most.  Not all.  So, I think still keeping MS on the page to keep looking into makes sense for you.   I'll have to read your other posts to see what your symptoms are.  Hope this gets sorted out for you and soon.
987762 tn?1331027953
COMMUNITY LEADER
Technically it is still possible to be diagnosed with MS without Obands but you need to keep in mind that it's very uncommon and these untypical pwMS would still have more than enough consistent objective evidence to be dx with MS even with out the Obands.

You've mentioned that this started almost a decade ago in your teens, that you only have a few non specific brain lesions and they're not in MS suggestive locations, and that you don't have any Obands, so imho it looks like your diagnostic evidence is actually pointing away from a neurological condition like MS and your best direction to look at is what's associated with small fiber neuropathy....

"Small fiber neuropathy can be the first sign of an underlying condition, such as diabetes. Other conditions that may cause small fiber neuropathy include:

endocrine and metabolic disorders
hypothyroidism
metabolic syndrome
hereditary diseases
Fabry disease
hereditary amyloidosis
hereditary sensory autonomic neuropathy
Tangier disease
immune system disorders
celiac disease
Gullain-Barre syndrome
inflammatory bowel disease
lupus
mixed connective tissue disease
psoriasis
rheumatoid arthritis
sarcoidosis
scleroderma
Sjogren’s syndrome
vasculitis
infectious diseases
hepatitis C
HIV
Lyme disease
Other causes may include:

certain medications, such as chemotherapy drugs
vitamin B-12 deficiencies
alcoholism
An underlying cause isn’t always found. In these cases, small fiber neuropathy is considered idiopathic."
https://www.healthline.com/health/small-fiber-neuropathy#causes

Hope that helps.....JJ
2 Comments
Well actually I am in my thirties. My symptoms started very suddenly at age 28.

My neurologist said the lesions in the one area of my brain could be causing my symptoms.

I have been tested for all of those autoimmune disorders. I have been tested for Lyme. I have been tested for diabetes and for thyroid issues. As far as small fiber neuropathy, I didn't pass the sweat test, but I don't think I have ever sweated normally even as a kid.

I am not overweight and I am not an alcoholic. I exercise and strength train. I don't have dry mouth and eyes. I don't have lupus antibodies or any signs of inflammation in my blood that would point to a connective tissue disease. I have never had any signs of inflammation. I don't have HIV or any hepatitis. I have been tested for vitamin deficiencies, which are not likely anyway as I am a health nut. I have been tested for nearly everything that is possible already, including all those things. I have had an elevated ANA for the past several years.

What I have as far as symptoms is erythromelalgia that comes and goes in flares, loss of dexterity in one hand, muscle stiffness, muscle tightening, buzzing/vibrating, burning pain, ataxia, clumsiness, heaviness in my limbs, tremor, heat intolerance and more recently a gait abnormality caused by who knows what. These symptoms always come and go in flares. Heat makes them worse, except for the stiffness which also gets worse in cold. I have recently nearly fallen several times. I lose muscle control sometimes. My muscles will give out suddenly. I get jelly knees. I drop things and knock them over all the time and I have never been clumsy in the least bit.

The symptoms are primarily in one entire  half of my body, including my face. Also my right arm is mildly affected. Small fiber neuropathy doesn't cause that. Also they are not only in distal locations.

Believe it or not I have researched nearly every possible disease, even the rare hereditary ones. Nothing else I have come across is likely. Nobody in my family has anything like this, and if it were hereditary and not autoimmune, I wouldn't have flares.
It was very very late over my side of the globe when i replied or i'd of noticed i'd inadvertently deducted the 8 years off your twenties to come up with this starting in your teens and not your 20's as you mentioned....

"I have already been sick for years. I became disabled when I was still in my twenties, and they did a lot of tests and decided I had an autoimmune disease. I was previously very healthy and in good shape with a healthy lifestyle. I never really had the symptoms of that disease nor was there any other evidence for it. I think they just decided to put something down and start treatment. The medications they gave me didn't work and I got worse. Now I feel like I probably have had MS the whole time. So if this had just begun for me it would be easier to wait.

I feel like after being disabled for eight years that they should just hurry things up already. This disease has ruined my life at this point and I want to be able to work again."

There really isn't much else i can think of to say in regards to MS and the diagnostic information you've provided, i know you think it's always been MS but if it is your objective evidence is not obvious and you'll find there wouldn't be many  neurologists comfortable dx-ing MS without a lot of evidence consistent with MS....unfortunately you may still be in medical limbo for awhile yet.

Please keep in touch.......JJ
Avatar universal
Hi. I’m brand new to this community. I was diagnosed with MS in 2006. I didn’t see in your posts whether you had an MRI of your spine done. I’ve had all the symptoms, and more, that you described with the exception of the head and neck tremors. However, symptoms can vary quite a lot from person to person with MS. And as you already know other diseases can cause similar symptoms. When I was diagnosed they had to do MRIs of my spine as well as my brain. MS lesions can happen in both locations. Finding lesions in both the spine and brain would help clarify or make the diagnosis. I don’t know how your doctors can make an accurate diagnosis without MRIs, with and without contrast, of your spine!

Empathizing with your frustration,
Tina
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