Clear MRIs, definite MS symptoms

[ottersa21]

Hello,

I am new to this forum and have actually never posted on ANY forum but I'm to the point of frustration. I have had now two "rounds" of neurological symptoms.

The first round included numbness tingling, brain fog, severe muscle jerks while sleeping, some strange facial numbness and itching, minor bladder overactivity, mild drop foot, and some right arm weakness. Checked it out with a neurologist (MS specialist). She ordered a brain MRI and it came back clear. That, combined with a perfect neuro exam led her to say NO MS. (I was also tested for Lyme's, B12, etc. which was all negative.)

Fast forward another month or two and the symptoms came back again. This time they were a little different and a little more severe. First I noticed brain fog again (word recall), and just kind of a "fuzzy" feeling. Then my left eye went blurry and had mild pain behind it for about a week (went to ophthalmologist who deemed me normal). As soon as I felt like my left eye was back to normal, a similar thing happened in my right eye.

Then my bladder went nuts. I was probably peeing 20 times per day and always had the urgency feeling. This has calmed down a bit, but I'm definitely still going more than average.

The symptom that has scared me the most though is the leg stiffness. Both legs (although more on the right) have been so, so stiff for about a month now. I can walk and even jog, but the stiffness is very noticeable. All I can do to make it feel better is stretch, however this hasn't "cured" it by any means. At times my muscles have been so tight that I can literally feel it through my skin when I touch them.

My neurologist refused to do any more MRIs after I told her of this latest round of symptoms. So I went to my GP and she ordered all spine MRIs and a repeat brain MRI (all with and w/o contrast).

I just got the results back today and they said NO SIGNIFICANT FINDINGS. My GP's note said "No evidence of MS."

I am floored. How is this possible? These symptoms and the way they came on seem textbook MS. I cannot get my head around this NOT being MS. (And to be clear, I do not want MS of course, but I also don't want to delay treatment if it is MS.)

So I guess my question is: Even with all clear MRIs, could this still be MS? (For the record, my scans were done on very high powered machines so hopefully there were no missed lesions, inflammation, etc.)

Thank you for reading this long post and for any feedback you can provide. I have high anxiety with these symptoms and I just don't think I can rest easy despite these MRI results.

[Snoopy]

So I guess my question is: Even with all clear MRIs, could this still be MS? (For the record, my scans were done on very high powered machines so hopefully there were no missed lesions, inflammation, etc.)

It is highly unlikely to be Multiple Sclerosis with clear MRIs and a normal Neurological exam/evaluation.

These symptoms and the way they came on seem textbook MS. I cannot get my head around this NOT being MS

The reason you are having a hard time understanding that you do not have MS is the assumption that your symptoms are "textbook for MS." There is no symptom unique to Multiple Sclerosis. There are many other conditions, vitamin/mineral deficiencies, some medications and mental health issues that can cause the same type of symptoms as those seen in MS.

[ElliotB]

"Even with all clear MRIs, could this still be MS?"

Yes definitely. Some diagnosed with MS have clear MRIs.

Keep in mind that there are about 400 illnesses that have similar symptoms to MS.

[lyndacarol]

The first round included numbness tingling, brain fog, severe muscle jerks while sleeping, some strange facial numbness and itching, minor bladder overactivity, mild drop foot, and some right arm weakness. Checked it out with a neurologist (MS specialist). She ordered a brain MRI and it came back clear. That, combined with a perfect neuro exam led her to say NO MS. (I was also tested for Lyme's, B12, etc. which was all negative.)
…
How is this possible? These symptoms and the way they came on seem textbook MS.
…
So I guess my question is: Even with all clear MRIs, could this still be MS? (For the record, my scans were done on very high powered machines so hopefully there were no missed lesions, inflammation, etc.)

Welcome to ThisIsMS, ottersa21.

The problem in diagnosing MS is that MS symptoms are common to many other conditions. There is no definitive test for MS (not even an MRI); testing for all the other possible conditions must be done and those conditions must be ruled out first before MS can even be considered. MS is a diagnosis of exclusion.

Your neurologist made a good start: discussion of your symptoms, physical exam of symptoms, and blood tests (for Lyme disease, B12 deficiency, etc.).

I am especially interested in your blood tests – "all negative" is not an adequate result. What were the actual number results for your vitamin B12 testing? The reference range for B12 is notoriously low and outdated in US labs – the cutoff for deficiency is around 200 pg/mL (at my lab it was set at 213); in Japan a score below 500 pg/mL is considered deficient and is treated as such. So, you can see that if you had 300 or 400 in the US, doctors would say that is fine; but in Japan you would be treated for a deficiency.… You need to have the numbers!

Did you have a vitamin D blood test (the "25-hydroxy" test)? Over 1/2 the world's population is deficient in vitamin D. What was the actual number result for this test?

Did you have other nutrient testing? Magnesium? Zinc?

Did your blood tests include testing the function of thyroid, liver, and kidneys? Have you been tested for celiac disease? All of the above deficiencies can result in neurological symptoms (even your anxiety can be a symptom); and they need to be ruled out.

My "feedback" is the suggestion that you see your GP and have any blood tests that have not been done. Ask for your own copy of any test results – it is important to have the actual numbers.

(By the way, it IS possible ultimately to be diagnosed with MS, despite normal MRIs. I myself had 3 clear MRIs, before a fourth found lesions. I know of one person who had MRIs over 14 years before she was finally diagnosed with MS.)

[ottersa21]

Update: I actually got the mri report this afternoon. Most of it read as "insignificant" but then there was this: "tiny area of t2 and STIR hyperintensity within the central cervical cord with a maximum diameter of approximately 1 to 1.5 mm. The cord does not appear expanded." Isn't this a lesion?!

[ottersa21]

Also, my b12 was 800 or something. Almost TOO high my gp said. Haven't done a vitamin d test yet.

[Snoopy]

Update: I actually got the mri report this afternoon. Most of it read as "insignificant" but then there was this: "tiny area of t2 and STIR hyperintensity within the central cervical cord with a maximum diameter of approximately 1 to 1.5 mm. The cord does not appear expanded." Isn't this a lesion?!

There is an impression section on the MRI report that gives possible causes for findings but is not a diagnosis.

It is possible to have clear MRIs and have MS, however only 5% of those diagnosed with MS have clear MRIs. It would be highly unlikely to have MS and have a normal Neurological exam, those with MS will usually show some deficits upon exam even if the MRI is clear.