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Is it possible to have MS despite lumbar puncture and brain scan showing MS unlikely?

Hi. I have a four year diagnosis of RA/ connective tissue disease - now under review as I have no synovial swelling in my joints these days. Meanwhile I still have s systemic inflammation (inflammatory markers raised) and am being investigated by a new rheumatologist in a new area. I will see him again in two days time. He has a special interest in Lupus and Vasculitis. But none of my antibodies are positive now.

Meanwhile over the past years my main symptoms have been neurological. Specifically pins and needles in legs and arms and most recently in my gums, nose and left eye. So a year ago I was referred to a neurologist and he was very thorough. I had nerve conduction tests which showed nothing, I had a brain and neck MRI which only showed mild diseased vessels normal for my age of 52. I had a lumbar puncture which showed paired oligloclonal bands - which indicate a systemic process is occurring but not MS - which would show uneven bands in serum blood compared to cerebral spinal fluid. So a year ago my neurologist put my case back to rheumatology - saying he thought I had a clinically confirmed small fiber neuropathy. Having had a diagnosis and been treated for seronegative RA I accepted this at the time.

However nobody in my medical team would investigate my issues with balance/ dizziness/ disequilibrium / misjudging surfaces and doors etc. I suffered from this for 18 months. For my nerve pain/ parasthesia I tried Amitriptyline, Gaberpentin and Duloxetine - all with bad side effects. I have tried four disease modifying antirheumatic drugs for RA and have had severe allergic reactions to all. I have had three courses of oral steroids - most recently I took these for six months and at the higher doses my dizziness/ vestibular problem disappeared. After 18 months this problem has gone despite me being off steroids now. The remission of this symptom has been wonderful but I’m always fearful of it coming back now. I also have Hashimoto’s Hypothyroidism.

An oral surgeon I saw earlier this year told me that I should have a scan of the nerves at the back of my head. He said he has only seen parasthesia of the kind in my face in MS patients, despite this being ruled out a year ago. Another dentist told me the same thing but explained Vasculitis is sometimes misdiagnosed in as MS. I’m presently not fitting any disease that my rheumatologist can pinpoint.

Just wondering if anyone here has ever been in my shoes before MS was finally diagnosed?

Hi,

Just about everything is possible, but some things are not very likely. Lumbar puncture is wrong in about 10-15% of cases, as I understand it (false positives AND false negatives for MS are both possible). Meanwhile, it is possible for MRI scans to appear clear in the early stages of the disease, but in general, this would be less likely, the longer you’ve had symptoms - i.e. the damage can’t stay invisible forever.

So what would be the chances of someone having a misleading LP and a misleading MRI? Statistically, I don’t know, but it has to be small, because the chances of a misleading LP by itself are only 10-15%, so the chances of getting a misleading MRI as well must take it down further - to under 10%? Under 5%? I don’t know, but it must be small.

For two “unlikely” things both to happen, you just multiply the odds. So say there is a 1 in 10 chance of having a falsely clear MRI, and also a 1 in 10 chance of a misleading LP result, the combined odds would be 1/10 x 1/10 = 1/100 - or 1%. So a very small chance that both are wrong.

Of course, in the real world, things with very small chances do still occur. We hear of freak events - some tragic, some miraculous - all the time. So “very unlikely” is not the same as “can’t happen”. But “both right” is overwhelmingly more likely than “both wrong”.

Tina

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Thanks Tina. I agree entirely and have faith that my neurologist knew what he was doing. As I’ve said they know something systemic is occurring and I have fluctuations in inflammatory markers so it would be MS as well as, rather than instead of RA/ connective tissue disease. However the lumbar puncture took 8 attempts at tap and most if he CSF was contaminated so they only caught enough to look at bands. And I do have paired bands whereas normal/ negative would be no bands at all. It is the fact that my optician and oral surgeon and a dentist have all said my symptoms woukd normally flag up MS that made me wonder if there might still be a stone left unturned. But I’m probably clutching at straws because the uncertainty and bizarre nature of my symptoms (especially pins and needles in gums, lips, nostrils and left eye) is so annoying and distressing to me.

Again, many thanks,

Mat

Hashimotos can lead to Hashimotos encelphalitis which is very rare and it causes neuro symptoms. It is treatable but unfortunately doctors miss it as it is very rare.

Moyna x

Thanks Moyna. I had never heard of this before. However I looked it up and as I’ve had these symptoms very slowly progressing for five years I think Lupus, Sjogrens, Vasculitis, Scleroderma or an unusual type of RA are much more likely contenders for me. But interesting to learn of this nonetheless. I wonder if mixed or undifferentiated connective tissue disease and Hashimoto’s can sometimes overlap with MS - since all these diseases can have neuro features and are all autoimmune?

Unfortunately your statistical analysis is not correct. Some results can be positively correlated: so one is affected by the other or is there because of the other. So it may be that one test being negative correlates to the other being negative, I don’t know, that is something for a GP or medical researcher to detail.

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