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So this is limboland....*looks around* it sucks....

Hi all, new here - I kinda hope it’ll be a fleeting visit as RRMS will get ruled out soon… Maybe. Just wanted to tell my story to see if it resonates with anyone or if anyone has any wisdom about what else could be going on. This all started in 2015, when I hit 41, I have a stressful job (I’m a senior midwife) but I usually handle the stress pretty well so I don’t think it’s related! Anyway… I was away on holiday and started to get odd sensations in my left arm, pins and needles and buzzing sensations, also this deep itch that couldn’t be satisfied by scratching. I returned from holiday and thought not a lot of it. Then one day near that initial event, I was at work, put the phone down and got this shock down my spine into my legs and feet. This persisted, every time I put my chin to my chest, I just likened it to an electric shock with buzzing - not pain. As a health professional I totally know the perils of Dr Google but as this was such a specific symptom I figured it was worth a Google. I discovered the symptom was perfectly described as L’hermitte’s sign or phenomenon. I went to see GP because it was really irritating and would sometimes make me jump such was the ferocity of the shock, meanwhile the parathesia in my left arm continued. I was referred to a neurologist and was prepared for a long wait. I was lucky, I saw one within about 3 months of referral. He did some motor tests and so on but didn’t refer me for Mri, the symptoms had long since stopped. They only lasted maybe 4 or 5 weeks then just disappeared. By the time I saw the neurologist I felt fine, I almost cancelled but because the symptom was so strange I figured it was best to keep the appt. He told me to go back to my gp if it reoccurred. Nothing happened until last September 2017 so about 2 years from first episode. I woke up one morning with a numb butt cheek on my left side, extended up to about the butt dimple, slowly the numb sensation spread down my left leg. I could feel my leg, I could walk, but the sensation was all wrong. In the shower if I had warm/hot water on my back I could feel where the sensation changed form normal to abnormal because the water felt freezing cold on my left buttock all down my leg to my foot. It felt perfectly normal on the right and above. I again went on holiday later that week, again a reason I feel stress is not a factor (can you tell what my gp has been suggesting!). My right arm felt weak, so weak I didn’t risk driving, and I couldn’t write properly, if I held my arm up it shook with effort. A week or so later the deep itch started again but on the right side, weak arm… from elbow to wrist, so bad that I’ve scarred my skin scratching with no relief. Interesting to note it was absolutely boiling on holiday, high 30’s at times. The left sided lower quadrant numbness and altered sensation persisted it was as if I’d literally been divided into quarters and only the bottom left quarter felt numb. It made it difficult to tell when I needed to wee so I’d only just get to the loo in time and I couldn’t stop the flow using pelvic floor muscles. I remember paddling in a lake with my son that was chilly, but the water felt like it was scalding me. Obviously all these things bothered me but I was 9 hours deep in France so decided to see gp when I got home. Initially I didn’t because within 3 weeks (the week prior to the holiday, and the 2 weeks of the holiday) - it resolved, all of it, by the end of my holiday, so I was able to do the driving on the way home. Therefore I didn’t book a gp appt until a week or so after returning home, but only because the possible L’hermitte’s sign returned within a week of getting back. My gp then requested I be seen again by neurologist and wanted me to have an mri. He also did bloods, I was a bit anaemic, but normal b12 and no hypothyroidism, and not diabetic by hba1c. I had slightly low folate and put on folic acid and iron supplements. Within a couple of weeks the l’hermitte’s disappeared and I felt entirely normal. It took 6 months, or until approx 4 weeks ago to get the neurologist appt. I saw a different member of the neurology team, turned out last guy was a locum. She did all the usual motor and reflex tests. I asked her if it was likely to be a trapped nerve or something, she was non committal. Her plan was more bloods, mri +/- contrast then +/- LP based on results. I had her report within 7 days. First thing struck me was I had an mri appt within 3 weeks of being seen… Pretty speedy I thought… Then I read her report which covered the history I gave her, pretty accurately and said that I had ‘bilateral positive Hoffman sign, hypereflexia and equivocal plantar response’ (babinski sign)… I’ll be honest… That set me off on a Google mission, none of it meaning anything to me… Unless it comes out of a uterus I’m pretty unfamiliar with it! Everything I read pointed to something neurological definitely going on to have these abnormal reflex responses. Now I had X 2 episodes of neurological symptoms disseminated in time and space, plus X 3 clinical findings suggestive of spinal lesions. Suddenly the speed of the mri appt seemed to make sense, she wrote on her report that she had informed me that demyelination disease was a possibility (actually she didn’t but I’ll let her off!). So I had the mri on Tuesday this week, brain and spine and am currently awaiting results. I was in the scanner an hour and ten minutes, they cannulated me prior to the scan ‘in case’ they needed to use contrast. About 40 minutes in they pulled me out of machine and said ‘yes we have decided we DO need the contrast’ which my inquisitive brain is constantly trying to work out is it because they saw something they wanted to highlight… Or couldn’t see anything so wanted to be sure they weren’t missing anything… Though it seems that contrast is often used just to highlight structures it still seems weird that they did it after so long into the the scan. Incidentally my bloods from 4 weeks ago showed a raised ESR of 40, folate improved to almost normal and hb still a bit low but not by much, however she wrote to my gp and said it showed microcytic anaemia and could he do iron studies. I had those bloods done on Tuesday as well just after my scan, another hba1c which was same as first so not diabetic, folate has almost halved in 4 weeks but hb even better than before, b12 always normal, other results also normal. Didn’t repeat ESR. So now I’m waiting for the report or a letter or a phone call or basically some contact. When I saw the neuro 4 weeks ago I had slight tingling pins and needles in my left hand but nothing more. Ironically that has since seeing her increased in intensity and I have the chin to chest symptom again, except when it happens it just buzzes down into my hand to the tips of my fingers not down my spine like it did in the previous two events. I’ve also got terrible fatigue, and feel weak, particularly in my left leg. So… Thats my story so far, if anyone has any light to shed I’d be grateful for it! X

Well, yes, your story is a familiar one in essence as far as that goes, which isn’t very far, of course because no one one here is a technical expert.

All I can say is that it sounds as though you are on the right road to find out what ails, and that I hope it is not as bad as you fear. Hang on in there and try to stay calm as the process works itself out - not easy, I know.

I am sorry that this worry has come to your door. And welcome to this Forum. In the nicest possible way, I hope you won’t be with us for long. But if you are, you will find that most of us are busy making a good life for ourselves with MS, just as you would if it came to that, which I hope it won’t.

Alison

Definitely l’Hermittes; that does NOT mean it’s MS; see L'Hermitte's sign - multiple sclerosis encyclopaedia

The reason they use contrast, as with a vast majority; nearly all NHS MRI’s have a resonance of 1.5 Tesla. To get a very good image you need a 3T.

So don’t get disappointed; no that’s probably the wrong word; deflated if they can’t find any lesions. I am going to copy an email I received from Rizzo; please also read her sticky; above https://community.mssociety.org.uk/forum/new-diagnosis-and-diagnosis/brief-beginners-guide-brain-and-mri

The last T2 FLAIR scan I did of my brain used 70 slices (on a 3T scanner). The one I had done today - 13 (on a 1.5T scanner). THIRTEEN. THIRTEEN!!!

Thankfully I wrote it out the voxels/T2 reply in Word before posting - to avoid the dreaded time-out! So here it is…

A MRI image typically consists of voxels (3D pixels). Slice thickness is one dimension (on the z-axis if you think of maths). The images you see on the CD show you the other two dimensions (on the x- and y-axes). You can set the voxel size to anything you want, in any dimension; all that happens is that it changes the time the scan takes to run (and therefore, of course, how much it costs). The smallest voxel size used in everyday MRI is typically 1mm x 1mm x 1mm. The “off the shelf” scan that I used to use for this size of voxel had 176 slices. The voxels (and slices) cover the whole brain irrespective of what the voxel size is – nothing is missed out (but see later).

If a standard T2 sequence is used for the scan, white matter gives off a poor signal and shows up as dark whereas lesions (which are full of fluid) give a strong signal and show up as bright.

However, the brightness of a voxel depends on the average of the response from the matter represented by that voxel. So a voxel that is 1mm x 1mm x 4mm will show the signal generated by all matter located in that 4mm3 cube. That is, if the voxel only contains white matter it will be dark in the image, if it only contains fluid it will be bright, but if it contains a mix of white matter and fluid it will look somewhere between dark and bright, depending on the proportion of the different matter types.

So if you have a large voxel (say 4x4x4) and a small lesion (say 1x1x1), the overall signal in the voxel will only be slightly higher than one without a lesion (and therefore look only slightly brighter, and therefore may be overlooked). [NB Small lesions would also not always be completely contained within one large voxel – it is more likely that it would be partially in at least two. So this makes it worse.]

But if you have small voxels and a large lesion, then you will get several very bright voxels (where the matter is all fluid), some intermediate voxels (where there is a mix of fluid and white matter), and some vaguely brighter voxels (that contain predominantly white matter).

In other words, small voxels are much better for detecting lesions.

So, can lesions be missed if you use thick slices? Basically, yes. It is entirely feasible. However, they would have to be much smaller than the slice thickness because if they are closer in size, they would contribute sufficient signal to make the voxels significantly brighter than the surrounding voxels and would (should!) be picked up by a decent radiologist. Saying that, it is possible that it might be missed if a small lesion, by chance, spans lots of voxels (e.g. if it is centred on where four voxels meet on that slice) and the signal is lost by the averaging with the white matter signal in those voxels.

However, there are new “pulse sequences” (the settings that programme the scanner) that are particularly sensitive to fluid. If you use one of these rather than a standard T2 sequence, you will be able to use bigger voxels and still be able to detect lesions relatively easily. And the power of the scanner makes a big difference too. A 3T scanner is much better than a 1.5T scanner.

So, if a hospital has a 1.5T scanner and a neuro is ordering a standard T2 scan, then he should be asking for a high resolution (i.e. small voxel size).

If the hospital has a 3T scanner and the neuro is ordering a FLAIR or another new type of pulse sequence that’s good for fluid, then he can get away with a lower resolution.

[NB A related point: it is possible to set gaps between slices. For example, the MRI may capture signal from 0-4mm, 8-12mm, 16-20mm etc rather than 0-4mm, 4-8mm, 8-12mm etc. This would DEFINITELY miss lesions!]

So the trick to not missing lesions is not so much about the number of slices, but about the voxel size, whether or not the slices cover the whole brain without any gaps, the power of the scanner and the choice of pulse sequence.

So there you have it; as you say limboland sucks but it should not be long now before you get some treatment.

Good luck.

George

Thankyou so much for your responses! It’s very kind to spend time writing out a reply. I know noone here can diagnose me, just interested to know if the story sounds familiar. I’ve done a fair bit of research myself, because I’m naturally inquisitive not because I’m morbidly seeking the worst possible outcome. My hospital, also the one I work at, it’s Mri has been broken for a few months so we contract out our mri requests to our nearest private Spire hospital. So I just checked their website and they have a ‘Siemens Magnetom 3t Skyra’ which says " MAGNETOM Skyra, as the top-of-the-line 70 cm 3T scanner, offers various technological features, aiding you in obtaining excellent image quality and maximizing 3T" hopefully then resolution wise it should be OK. I fully appreciate I just have to wait and see what’s going to happen, I guess I’m just feeling so lousy at the moment with a this really irritating parathesia in my arm, weak legs, strange buzzes and tingles in a variety of places and utter constant exhaustion. I feel like I’ve swum 50 lengths and just got out the pool, and have that heavy dragging feeling in all my muscles. Oooo the other thing that keeps happening which is new… Is roughly every hour or two, this sweeping almost ‘chill’ comes over my left thigh, it buzzes like a tens is switched on and goosebumps raise up, but just in a patch about 6 inches X 6 inches on that one thigh, lasts about 30 seconds, and it’s nowhere else. Its not related to being cold because it happened laying in the sun, in a warm bath, when I was warm in bed… I showed my husband last night when it happened because I wanted someone else to see it… He just called me weird! Helpful! Still it’s a strange new thing, not sure if related or not but something definitely not normal with the autonomic nervous system. I guess it’s just the waiting game to see what…

Hi Lou,

Obviously we’re in no position to comment on a possible diagnosis, but it would appear that you’re being investigated for neurological symptoms. There a many conditions that can get confused with MS, which is why your neurologist and GP will be acting with extreme caution at the moment. Nobody wants to rush to the wrong conclusion.

Please let us know how things pan out and always feel free to talk about your experience here. Whatever is going on with you it’s most likely that there’s someone here who has been or is going through the same thing.

Limbo is a place that nobody wants to be but we do understand what it’s like.

Best wishes,

Anthony