Undiagnosed: Non-specific white lesions and tingling in hands and feet

New diagnosis and before diagnosis
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I am a 40 year old female and have had tingling in my hands and feet, sometimes extending to my calves, forearms for the past 4 months. This is bilateral, mild and moves around - has been intermittent . Eye test in December was clear.

I had an MRI of the cervical spine and an EMG of the hands and feet - both clear except EMG which showed very mild carpal tunnel in the right hand. I developed tension type headaches in December after some osteopathic treatments for a (chronic) sore neck and back, and followed this up with an MRI of the brain (done without contrast). This showed:

‘Numerous supratentorial white matter hyperintensities - generally in the frontal and parietal lobes. They are not associated with the corpus callosum or subcortical regions and are as such non-specific. They are greater in number than would be expected given patient years’. I am waiting for the CD, and don’t know the exact number of white lesions.

I noticed the tingling after a few weeks of starting Omeprazole and thought it might be linked to a known side effect of poor absorption of B12, but my levels when tested in January were in the 500s and hence fine, although ferritin and folate are quite low, and my TSH is 3.5 - on the higher end, but still within the normal range. My current neurologist does not think this indicates MS (given distribution) but has referred me to another neurologist whom I will see later this month. The tingling continues - mild most times, I ignore it. I am supplementing B12, folic acid and magnesium now.

Can there be other causes of the white matter hyperintensities apart from MS lesions? From what I have read it seems that high cholesterol, obesity can cause white lesions as well? I have been obese for the last 4 years, but have recently lost a significant amount of weight. My cholesterol is high, but blood pressure is normal.

Has anyone’s MS started like this? Does constant tingling point to PPMS? Do I need an MRI of the spine - can this definitively diagnose or rule out MS? Thank you.

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PS To add, my neurological examination was otherwise normal (no Babinksi reflex etc.) except ‘mild brisk reflex’ in my forearms.

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Hi Pyra

I can’t answer most of the questions or understand what your MRI is, but if the neurologist says it might not be MS then trust his opinion as it’s only a neurologist who can say that it is or isn’t MS.

You say that your cholesterol is high are you taking statins, I don’t know if taking statins for MS will work the same as normal cholesterol. I know that I am 5.7 which is normal I was a few years ago 7.3 the lowest i have been is 3.7 but i am only on 20mils a day not 40 as i was on before.

Do you write down what symptoms you have because i for one can’t remember everything. You at least an appointment with the neurologist in the end of the month. Good luck.

Kay

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Hello

I can’t interpret your MRI either. Sorry.

If the first neurologist stated the hyperintensities were non specific, I take that to mean not demyelinating. Which together with the distribution of the white spots is what caused him/her to not consider MS to be likely.

Presumably the second neurologist to whom you’ve been referred is an MS specialist? Or more expert in reading MRI scans?

Your other question was regarding the start of MS, I’ve never experienced intermittent tingling, or tingling that moves from place to place. For me, it’s always lasted longer in just the one location. This obviously is meaningless when applied to anyone else. MS is a bugger for that, it can present in so many different ways that one persons experience is completely different to the next. Many people do have optic neuritis as their initial MS symptom, but again this differs from person to person.

Hopefully the second neurologist will give you either more concrete answers or refer you for a spinal MRI and maybe the brain too, but with contrast.

Sue

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I am just reading this. Were you diagnosed?