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Transverse Myelitis

I have recently been diagnosed with transverse myelitis that will probably become MS.

Spinal cord lesions- brain found incidental meningiomas that are very tiny - nothing else.

i really don’t know what to make of it all- anybody willing to share their experience.

thanks

Hi Cazza,

Sorry to read your news.

I am also without confirmed diagnosis but started with Transverse Myelitis. Best advice I can give you is try not to worry (arrghh easy to say I know) and don’t frighten yourself with the Internet (again, easy to say). I felt very overwhelmed when I started on this journey (2012) and do surround yourself with friends and family and don’t feel bad about talking about it as it does help. There’s a lot you may feel that you don’t know and a lot of fear.

I did not know where to turn first and the forum frightened me (initially), so I rang the great folks on the helpline and they sent me a bunch of information. I then felt brave enough to engage with the forum and kicked myself for not doing it sooner as the amazing folks on here were (and still are) a great comfort. They have a wealth of experience and knowledge and are great with support on the days you just feel like it’s all too much.

If you have a follow up/additional appointment with your neuro, don’t be afraid to go in with a bunch of questions. I did and looking back, I must have had some crazy ones (like - is it ok to dye my hair/use nail varnish/what should I eat/not eat etc etc) but I had never heard to TM or MS and I just did not know what I should or should not do.

My journey has been tough (not so much on the health side, but the navigation of the NHS/private system and trying to understand what I have and how to deal with it). This does not mean yours will be but I guess, my best advice to you is to not be afraid to ask the professionals that may now be involved in your life all and any questions that you think may provide you with support, advice, a pathway and a management plan.

Also, as I was told, an ‘attack’ of TM may also be just a one off incident and may never occur again/develop into MS. Look after yourself and ensure that you (if you have not already) get your Vit D & B12 checked and ask for the numbers for both as GP’s rarely understand the normal ranges and us folks that have these sorts of issues (whether one off or not) tend to be on the low end of the numbers and the GP’s always say we are fine but most good neuro’s like our numbers to be much higher. I know that when my numbers are low, I really feel it but bounce back quickly when I take the relevant supplements.

Can I ask what your presenting symptoms were?

Feel better and this forum is a great place for questions/ranting/advice.

Rosey x

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Thanks so much for your response.

It’s a minefield!

I think I had the symptoms for months (sore back / knees ) before it escalated to sensory issues in legs/?heavy feeling/ reduced balance and coordination.

i had 2 mri scans which took some time before being treated with steroids to reduce the inflammation. Very slow onset in comparison to most.

Symptoms are virtually symmetrical- don’t know if that’s a good thing.

Vit D was 41 so on supplements- I don’t think B12 has ever been checked.

Neuro has been pretty rubbish so have an appointment at the National hospital on Jan for further clarity.

Thanks so much.

caroline.x

Been there, done that, got the Tee-shirt.

I started with TIM. Toes went numb. Numbness spread up my body as far as my armpits. GP said “See a Neuro fast!” Went private (the NHS does not do “fast”). The numbness faded, but an MRI showed spinal lesion T5-T6. Neuro referred me to himself in the NHS and then a round of tests (LP, MRI, Blood, etc), and a year later it was re-diagnosed to RRMS. In the meantime I had done a trip to Prague and two to the US, with only a increase in fatigue to show that there was anything wrong. The first relapse was five months after that - which started the clock for DMD eligeability.

You need to make sure - ask - that the TIM onset counts as a first relapse, and get it across that you want to start a DMD as soon as you can. This could defer further relapses for several years. If you already have one, ask your MS/Neurology nurse.
If you don’t have one, ask your Neuro’s secretary about being put in touch with one.

Geoff

Thanks Geoff. Yes Neuro said if I had one more lot of symptons I would be diagnosed with MS and could start Dmd’s. Can I ask did you have any brain lesions when diagnosed?

it is so hard to get your head round the uncertainty. Are there actually people out there who don’t progress to MS?

Hi guys,

so sorry to hear about all your experiences. I too was diagnosed with TM in March and am now in the same boat as you all. Will we be in the lucky 20% who don’t convert from Transverse myelitis to MS??

i wake up every day and wonder if my legs will still work! I went from being a fit and healthy 35 year old to waking up almost paralysed with TM. After a course of steroids in hospital I have returned to 100% mobility now with lingering sensory side effects and an almost instantaneous reaction throughout my body to any kind of stress!!

Hoe do you all feel on a daily basis? Does stress make “it” worse? And more to the point, if we haven’t been clinically diagnosed yet - what is causing these symptoms? Are they permanent damage from the TM??

it would be so great to hear stories from people who were diagnosed with TM but never converted to MS!!!

kx

Keira- I am 35 too!

Doctor explained to me that the changes in sensations are the scars from the TMnerve damage. I have some stiffness in my lower legs and change in sensation in my left hand. Mobility is probably 80% of what it was as experienced temporary left foot drop. Mobility is improving with physio.

Hi cazza,

So sorry to hear that - how are you faring with day to day routines? Do you work or have kids?

how do you feel about the whole diagnostic process? It’s sounds so selfish and weird to say it but I almost WANT my diagnosis now to put me out of my misery!!

i really wish there were more stories of people who had TM who didn’t then go on to get MS. I’m sure they are out there!!

kx

I am okay actually. I work part time as a teacher in a special needs school and have a 2 year old- so pretty busy! I just get tired easily but managing to do most things. The good thing about having little ones is that life does have to go on. My neurologist has been dreadful so now seeing a different one next week who I hope will answer a few more questions.

fingers crossed.x