What to make of this....ideas needed!

[chris1963]

Hi all, first visit here, I wonder if anyone has any ideas about this?

I have l'hermittes sign.

Following a bout of flu in Feb 2015 I had a spell of dizziness which started my referral process..to an ENT who said labrynthitis, then vestibular neuritis as I had no hearing damage and passed all the audio/visual tests. Told to do a load of neck exercises, vestibular rehabilitation for the ear/balance issue. I reckon 250,000 vigorous neck movements over 2 months. Perhaps these damaged my neck...but hold on...

I wasn't happy and asked for an mri. It was on a 1.5T lay down machine. My brain was clear and normal but the cervical spine showed patchy high T2 signals throughout the dorsal columns. Neuro said artefactual as did a very qualified radiographer. Original radiologist suggested B12 deficient. However tests dismissed this. As did the neurologist for MS.

To complicate it all I have severe foraminal stenosis in c3 to c7 with some spurs but the neuro surgeon saw no compression and said lhermitte's could not be caused by what he saw on a sitting down mri nor did this machine pick up the high signal though it was a 0.6T resolution. A further mri on the original 1.5T, and a neck flexion x-ray showed no cord impingement. Though I would say at this particular time I wasn't "feeling" L'hermittes. This third mri did however show the same high T2 signal which the original radiologist thought was genuine as it appeared on both axis of the scan. It showed no change in appearance from the first mri several months earlier.

Back to square one. I still have it, worst just as I get out of bed, all the way down both legs. Or if I have been sitting straight for a while. I avoid neck flexion.

I passed all the neuro physical exams with just slightly brisk reflexes. No Babinski, Hoffman, heel and toe, toe to ankle, eye movements, fingers to nose etc etc all ok.

Neuro said not MS. Spine guy not mechanical.

Well it has to be one or the other!

Getting on 9 months now and Lhermittes is still very present. I have no other symptoms I can confirm. Not affected by heat or hot baths, no fatigue etc. I had some short term pins and needles after the neck exercises in my hands and on my knees but these passed. Bit of muscle twitching in the legs but I cycle 40 miles a day. Only at rest though. My medical past is uneventful, I landed on my head ski-ing 20 years ago but the neuro dismissed this after looking at the x-rays taken at the time, I have sub clinical hypothyroidism which isn't treated and nothing I can recall as symptomatic historically.

I have no idea what's going on. A one off viral attack? Cervical stenosis? Damage that isn't resolved? MS?

Perhaps an LP is needed.
Any thoughts anyone?

I do have a degree of anxiety clearly, as this worry has been with me nearly a year. But as far as I know this symptom is not reproduce-able by the mind alone! Also I had extensive bloods done to exclude other auto immunes like Lupus. Lyme tested for too though I know this is unreliable, they took 18 phials of blood so I think most things that can be tested for have been. All clear save the thyroid TSH being 6.5 which in the UK is sub clinical, elsewhere medicated for...

Oh, 53 year old male!

Kind regards... and thanks for any thoughts! Oh I see the neuro again tomorrow...

[lyndacarol]

Hi all, first visit here, I wonder if anyone has any ideas about this?

I have l'hermittes sign.

Following a bout of flu in Feb 2015 I had a spell of dizziness which started my referral process..to an ENT who said labrynthitis, then vestibular neuritis as I had no hearing damage and passed all the audio/visual tests. Told to do a load of neck exercises, vestibular rehabilitation for the ear/balance issue. I reckon 250,000 vigorous neck movements over 2 months. Perhaps these damaged my neck...but hold on...

I wasn't happy and asked for an mri. It was on a 1.5T lay down machine. My brain was clear and normal but the cervical spine showed patchy high T2 signals throughout the dorsal columns. Neuro said artefactual as did a very qualified radiographer. Original radiologist suggested B12 deficient. However tests dismissed this. As did the neurologist for MS.

To complicate it all I have severe foraminal stenosis in c3 to c7 with some spurs but the neuro surgeon saw no compression and said lhermitte's could not be caused by what he saw on a sitting down mri nor did this machine pick up the high signal though it was a 0.6T resolution. A further mri on the original 1.5T, and a neck flexion x-ray showed no cord impingement. Though I would say at this particular time I wasn't "feeling" L'hermittes. This third mri did however show the same high T2 signal which the original radiologist thought was genuine as it appeared on both axis of the scan. It showed no change in appearance from the first mri several months earlier.

Back to square one. I still have it, worst just as I get out of bed, all the way down both legs. Or if I have been sitting straight for a while. I avoid neck flexion.

I passed all the neuro physical exams with just slightly brisk reflexes. No Babinski, Hoffman, heel and toe, toe to ankle, eye movements, fingers to nose etc etc all ok.

Neuro said not MS. Spine guy not mechanical.

Well it has to be one or the other!

Getting on 9 months now and Lhermittes is still very present. I have no other symptoms I can confirm. Not affected by heat or hot baths, no fatigue etc. I had some short term pins and needles after the neck exercises in my hands and on my knees but these passed. Bit of muscle twitching in the legs but I cycle 40 miles a day. Only at rest though. My medical past is uneventful, I landed on my head ski-ing 20 years ago but the neuro dismissed this after looking at the x-rays taken at the time, I have sub clinical hypothyroidism which isn't treated and nothing I can recall as symptomatic historically.

I have no idea what's going on. A one off viral attack? Cervical stenosis? Damage that isn't resolved? MS?

Perhaps an LP is needed.
Any thoughts anyone?

I do have a degree of anxiety clearly, as this worry has been with me nearly a year. But as far as I know this symptom is not reproduce-able by the mind alone! Also I had extensive bloods done to exclude other auto immunes like Lupus. Lyme tested for too though I know this is unreliable, they took 18 phials of blood so I think most things that can be tested for have been. All clear save the thyroid TSH being 6.5 which in the UK is sub clinical, elsewhere medicated for...

Oh, 53 year old male!

Kind regards... and thanks for any thoughts! Oh I see the neuro again tomorrow...

Welcome to ThisIsMS, chris1963.

You have stated that blood tests dismissed a possible B12 deficiency… Your symptoms are common to B12 deficiency. Your original radiologist was wise to consider the possibility.

It is a good idea to request your own copy of any test results. Would you share the results of the 4 tests needed to rule out a B12 deficiency: 1) a serum B12 test, 2) RBC (red blood cell) folate test, 3) a serum homocysteine test, and 4) methylmalonic acid test?

Another possible cause of your symptoms is vitamin D deficiency. Have you had a vitamin D blood test (25-hydroxyvitamin D)?

Vitamin D3 is crucial for the proper functioning of the thyroid gland. D3 deficiency symptoms can involve the function of the thyroid gland.

Neurological symptoms can stem from vitamin D3 deficiency, since D3 helps control relaxation of muscles (skeletal and involuntary muscles) – this would include constriction of blood vessels and cramping.

You asked for "Any thoughts," these are mine.

[chris1963]

Hi,

Thank you for your response. The only figures I have are:

CRP 0.5mg/l
Ferratin 108.3ug/l
Vitamin B12 296pmo/l
Folate 37.21nmo/l

B12 increased to 750pmo/l after taking a supplement.

Vitamin D I don't have the numbers but I would say its unlikely as a culprit as I am outdoors many hours a day often in sunlight and my diet does have a lot of oily fish and eggs. Unless I have developed an absorption problem.

Thanks again for your input and thoughts. I see the neuro this afternoon so will post his comments later.

[chris1963]

So the visit to the neuro. I had no problems with the repeat physical, reflexes, Hoffman, babinski etc all fine. The mri shows multiple signals in the cord. First time referred to as lesions. But he didn't think they were ms lesions as they looked more like filaments on the horizontal axis though from above they covered a fair bit of the cord.
Transverse mylelitis was mentioned as was post flu virus....he is consulting some other specialists to get a steer! Ah well. Offered lumbar puncture and nerve tests but I'll wait for the other opinions first I think....
Thanks for any input.