Probably transverse myelitis?

New diagnosis and before diagnosis
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Hello,

I’m new to this forum and this is my first post. I don’t yet have a proper diagnosis, but I have been wondering about others’ experiences of being diagnosed with transverse myelitis, what their symptoms were, and whether they were later diagnosed with MS.

In mid-November 2016 I started experiencing strange sensation in both hands, . I went to the GP in November initially suspected carpal tunnel syndrome, but I wasn’t convinced for a number of reasons, so in mid January I went back to the GP, who ordered an MRI of my cervical spine. It showed a 1cm lesion at C2-C3 level, and I was referred urgently to a neurologist. He sent me off for a load of blood tests and a chest x-ray, of which I haven’t yet had any results. He also ordered a brain MRI - I’m waiting for a date for this.

He has written a letter to my GP that says “probable transverse myelitis”, but also says he would like to see the c-spine scan images (they weren’t sent to him with the radiologist’s report!) and is awaiting the outcome of the other tests, and will be looking to see if the brain MRI shows any other lesions.

I know that I’m not going to get any answers until he sees the brain MRI, and even then it may be a inconclusive, but I was wondering about others’ experiences.

From what I have read about TM, it seems that many peoples’ symptoms are far worse than mine, and appear very suddenly. I have had this hand business for 3 months now - it’s not numbness as such as I can still feel even the lightest touch, but it feels like my whole hand is sticky, and my palm and wrists are stiff (not painful, just kind of heavy). I can’t feel the difference between textures very well, and I think decreased heat sensitivity. I’d say it got worse to begin with but since Christmas has been about the same, but no improvement. But other than that there seems very little to report in the way of physical symptoms! I’m getting a bit of tingling down the outside of my left leg but it’s nothing major. I can think of a few little things I have experienced over the last 6 months or so (recurrent cramp in foot that went away after a couple of weeks; shooting pain in back of knee that went away; a couple of weeks of weird itchy arms and legs with no rash!) but nothing I would have ever gone to the GP about… then again, if you strung them all together, perhaps they would be significant. But I haven’t really mentioned them to the GP or neuro because I don’t want to sound like a hypochondriac, or start talking myself into something!

One thing I really have noticed is a kind of slowing down of my thinking, or making stupid mistakes that would seem out of the ordinary for me. I quite often can’t find the right word for something, or say the wrong word. I have a conversation with someone which I understand at the time, and then 2 minutes later I’ll ask a question that completely contradicts what they’ve just told me - I realise almost immediately, and am really surprised at myself - it’s like my brain isn’t computing the information properly! This I have mentioned to my GP, but she told me not to ‘overthink’ it, because fuzzy thinking is a natural stress response and I’ve had a lot to take in over the last couple of weeks. This is true - but tbh I don’t feel that stressed, and if I look back I feel my thinking has been a bit fuzzy for a while. The hand thing is annoying, but

From my reading online it seems that TM is less likely to be a first sign of MS when symptoms are symmetrical (like my hands) - does that ring true in others’ experience? Has anyone been diagnosed with TM with fairly mild, bilateteral / fairly symmetrical symptoms but then gone on to be diagnosed with MS?

Is it possible that TM symptoms come on quite slowly, hang around for a while (months!) but remain quite mild?

Can fuzzy thinking be a symptom of TM? At what point do you start to think it’s more than just a stress response? So far I’ve only mentioned it to the GP in passing and she didn’t note it.

Thank you if you’ve read this far, I know it’s long! It has helped a bit to type it all out. I know I can’t expect concrete answers, but any word of wisdom or personal stories would be greatly appreciated during this time of waiting!

Thank you

Sarah :slight_smile:

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hi sarah

all i know about TM is the experience of a friend who has it.

for now make yourself wait for the results.

don’t overthink things and do NOT get stressed.

much love

carole x

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Stress can really mess with your logic. I know and remember that I could think myself ill. Try a few exercises (mental ones) to calm your brain. In that way google is your friend.

Do something out of the house. See people. Talk! It all helps to take your mind from your worries.

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As you say; Judging by Lucy Alexander’s daughter Kitty TM affected her within minutes; see BBC TV presenter's heartache over daughter's illness 

I don’t like quoting others but she has; very correctly in my view; well posted the unfortunate occurrence.

George

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Hi Sarah I developed a numb right arm and hand with pins and needles in 2012. An MRI showed two lesions in my cervical spine and I was diagnosed with TM and I was told that I was too old to develop MS! I was discharged and told I would make a full recovery within two years.

Odd symptoms continued to occur and in December 2014 I started to have problems with my walking. In June 2015 I developed foot drop and a problem with my hip.

In June 2016 more lesions were found in my thoracic spine and I was diagnosed with progressive spinal cord MS phenotype and I now walk with a stick and FES. The consultant is still watching and waiting to see what develops!

We all have very different symptoms and experiences which is why it is so difficult to diagnose but I do hope you have some answers soon as it is so hard when you are left in limbo.

I have been dipping in and out of this forum for the last four years and have found it extremely helpful so a big thank you to all who contribute not only for the info but for the humour which often makes me smile! Sue xx

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Hi Sarah

I was diagnosed with TM in 2011, having had symptoms of tingling, numb patches etc since 2008 and some eye symptoms that started a year afterwards. (TM can be associated with Optic Neuritis, or MS can cause eye symptoms too, so its never been established what caused this particular symptom for me. Thankfully the eye symptoms have been intermittent and have never got any worse.) The tingling etc started in my hands and feet, then my legs, then the right side of my back and torso went numb and I started to get the tight cramping feeling round my abdomen which I’ve heard described as “MS hug”. I was actually relived when the MRI showed up a spinal lesion in 2011 because I thought I would finally get taken seriously by my doctors who before that had thought it was functional. I got a lumbar puncture and it showed Oligoclonal bands. I was told it was TM and there was a 10% risk of going on to have a diagnosis of MS over the next 10 years.

A couple of years ago a scan showed I had new multiple lesions in the spinal cord. I should then have had the MS diagnosis but I had moved house between then and my last scan. The neurologist said that the previous scan (done under a different NHS trust) was of poor quality and this meant he could not be sure whether the “new” lesions were really new or if they’d been there all along and just didn’t show up in the previous scan. So I now have a diagnosis of probable progressive MS.

I think your “fuzzy head” symptom can be a fairly common symptom of both TM and MS. I hope you find answers soon. In my experience TM can be a difficult diagnosis because most people don’t know what it is. Probable MS has also been tricky for me because the “probable” part makes it sound a bit vague. It’s only at work that I’ve felt I needed a diagnosis because sometimes I’ve not been feeling at all well and it is very difficult to explain this to people without a label that they understand.

I think it is important to remember that whatever you do or don’t get diagnosed with, that you yourself are the expert in what you’re going through on a personal level and on how your body is feeling. Even with a more certain diagnosis the neurologist can’t always tell you what to expect for the future. It’s all statistics and probabilities. If they tell you there’s a 10% risk of a diagnosis of something and then it happens to you, then the 10% goes to 100% just like that without necessarily changing things that much in terms of what your day to day life is like. I still don’t have a definitive diagnosis, and I’m trying to learn to live with the possibility that I might not get one any time soon. It’s been 9 years since this started for me and for the first 5 I was very focussed on getting a diagnosis because I thought then I would get treatment. But because my type of (probable) MS is progressive I am unlikely to be offered disease-modifying treatment anyway.

To cut a long story short I’m trying to focus now on staying as well as I can with or without a diagnosis. Your situation may turn out to be very different from mine, but I know how frustrating it can be waiting for diagnosis, so in the meantime respect your own experience and listen to what your body is telling you and be kind to yourself. Whether its TM or MS it’s a demyelinating condition so things like taking cod liver oil or trying an anti-inflammatory diet can’t hurt and will hopefully help a bit. I know that’s probably a small consolation, but little things can help and often these are the things you have more control over in an immediate sense.

All the best. I really hope you get answers soon.

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Hi again Sarah

This is just to add a bit about statistics. You’ve probably read a lot yourself about TM, so you may have this info already, but I found some statistics about TM that said that approximately one third of people make a full recovery, one third make a partial recovery and about a third have some significant lasting damage. The good news is that means that the majority of people (two thirds) make at least a partial recovery! I used to think I was in the middle of the three categories, since some of my initial symptoms got quite a bit better but then I got new symptoms, so it’s hard to tell. Now that I’ve got a diagnosis of “probable MS”, I don’t know if the initial TM diagnosis applies to me anymore or not.

The symptoms in my legs have become pretty much persistent, but urinary symptoms I had (finding it hard to pee and having numbness in that area) are now completely better.

I don’t know if that helps! It’s always nice to know that some symptoms can resolve or go into remission or maybe even never trouble you again!

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One more thing about diagnosis. I used to actually have a bit of a phobia about MS. When I was younger I did a brief voluntary work/training placement with my local branch of the MS Society and I was working on some stuff on their web site and reading about MS there. I felt so bad for the people with MS. I thought I would never manage to cope with something like that. Well now I “probably” have MS and definitely have something with MS-like symptoms and I’m still here! So I just wanted to say that somehow you will find a way through.

Often when a thing you feared actually happens it may not be as bad as you feared it would be. I guess it’s alright for me to say all that when I don’t have the severe debilitating symptoms which some people have, but then that’s also a thing to remember in itself - both MS and TM can cover a large range of experiences and symptoms for different people. So if you are feeling scared, then that is very natural and normal but it can help to find more information, since often the unknown is one of the scariest parts. As I go further down this path I’ve started trying to see the “unknown” in a different way - it means in a way “I’ll cross that bridge if and when I come to it.” Does that make sense at all? I find it helpful because it means when I’m lying awake worrying, for example, then I can give myself a valid reason to lay my worries aside for another day.

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Well, Sarah
I started with numbness in my toes. This spread to feet, ankles and points North, A GP said "I dxon’t know what you have, but you do need to see a neurologist fast.

Fast and the NHS do not go into the same sentence very well. The numbness spread as far as my armpits - more or less bilateral - and then faded away.
I saw a neuro privately, and he said Transverse Myelitis. I had a MRI (also privately, the next day) and a load of blood tests, B12 injections (“just in case”), went off to a NATO conference in Prague, and came home to a phone call inviting me to a Lumbar Puncture. The neuro had referred me to himself at the local NHS hospital, and after that and a few more MRIs, I was given the Dx of MS.

This all started just before my 70th birthday, and just before I was 71 the MS tag was put on. By this time I had done two more conferences (in Seattle and Orlando) and at 73 I gave up my part-time job. Since then, it has been a steady decline into SPMS.

Geoff

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Thank you Carole! I’m trying to be calm - and to sleep more, which seems to be helping a bit! X

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Thank you. I work full time and have 2 young children so most days I am able to keep myself occupied enough and away from Google! I’m trying to go to bed earlier as well as my candle-at-both-ends habit of many years does me no favours, stress-wise or physically! I’m definitely noticing that tiredness makes my symptoms worse.

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Thank you Sue. I’m sorry to hear of your diagnosis and mobility problems, but it is reassuring to hear that this forum has been such a help to you.

Yes, I don’t deal well with uncertainty but I suspect there is more of it to come! I am pretty sure that if there are no brain lesions (and if my bloods and chest x-ray are clear) then I will be discharged with the TM diagnosis. And will then be probably hyper-alert to every little twinge for the next few months! Anyway, we shall see…

Thanks again, wish you all the best x

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Thank you for your replies and for taking the time to tell me your story. I’m sorry it seems to have been such a long and uncertain journey for you - but I’m learning this is pretty par for the course with neurological illnesses!

Yes, that makes complete sense. I don’t deal well with uncertainty, but I’m slowly trying to think about it in a different way. There were a couple of weeks where I worried intermittently that perhaps it was something much more acute and fatal, and I might keel over at any second! But now I haven’t, I’m just taking each day as it comes!

I wish you all the best

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Thank you Geoff for taking the time to tell me your story, and I’m sorry to hear of your SPMS. I wish you all the best. Sarah

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Thank you for all your replies, I am truly grateful that you have taken the time to answer me.

I don’t feel too worried or stressed, just a bit pre-occupied and frustrated! Actually, maybe that’s the same thing! What I mean is, I’m not flipping out about it, I’m just a bit impatient for answers and I keep imagining different scenarios and how I would deal with them. Occasionally I feel slightly annoyed that this label has been put on me! Until a month ago I was just a bit bothered by these hands, but otherwise thought I was quite well, apart from a few aches here and there which I put down to getting older, not sleeping enough, falling asleep on the sofa too often and having an office job! Now suddenly a couple of doctors have told me that I am actually a bit ill and it could potentially be / or could have potentially been much worse! This is VERY inconvenient ;-))

My hand symptoms are about the same - some days I think they are getting better, but then the next day they seem to be back with a vengeance! The strange sensations seem to be shifting more to my left side now, and i’m getting tingling in my left leg. On the right side I’m getting more muscle pains. My memory/thinking definitely seems to have improved over the last week or so, but as I said above I have been trying to get a bit more sleep, so maybe that was the issue in the first place, alongside the general stress! I’ve also been getting a weird buzzing down my spine when I bend my head forward - it’s not painful or even unpleasant - it’s just odd! I remember a few instances of a sudden sharp pain going down my spine but higher up - actually I remember that happened once a couple of weeks before the hand symptoms started, because it took my breath away at the time! But I haven’t had that again for a few weeks now. The weird buzzing is preferable!

Anyway my brain MRI date has come through for 16th March, so hopefully that will help towards a firmer diagnosis. I realise that if the MRI is clear then I may well be discharged with the idiopathic TM diagnosis (I had no virus or anything remarkable in the weeks leading up to the start of my hand symptoms) and then will probably be obsessed with every little twinge for the next 2 years!

Thank you once again, wishing you all the very best

Sarah

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Hi there are people still on this asking questions as I see no reader posts

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First time here. Been bound to a bed since March of the year and just got out after four months and now after TM has taken my ability to walk I find it difficult to adjust.

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Hi Luckyme 28.

Welcome to the group. You have tagged on to an old post. You will get more replies if you start a new post…better on the Everyday Living forum.

When I was waiting for a diagnosis, I read about TM, as it might have fitted my symptoms.

It took 22 years to get the diagnosis of Spinal PPMS.

I spend around 15 hours a day in bed, so being totally bedbound must be really awful.

I am a full time wheelchair user and am hoisted for all transfers. Are you?

Boudsx

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Yes boudsx I am but lately my mental health has gotten the best of me and I’m afraid I’ll let it win, how do you cope?

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Hi again. I am lucky in that I have a good pair of carers and a hubby who look after me.

I do no housework, as I tire and drop things easily.

I darent ever tell my hubby how I feel, as he cant do emotions!

But my carers are great listeners and understand me well.

Now my hands arent working well either. I am sared of losing them.

Boudsx