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Transverse myelitis?

Wondering if anyone can help…

I’ve been suffering with lower back pain/spasms for over 6 weeks now. Gp initially gave me diazepam which barely touched it.

I returned to see him today and asked about the possibilty of it being transverse myelitis as after some reaserch showed that the symptoms described fitted with mine.

He told me that transverse myelitis is just ms under a different name and that my pain was caused by neither!

He gave me a prescription for co-codamol and referred me to physio!

I feel like i’ve been completely fobbed off without an explanation as to what is causing this awful pain!

Has anyone else been in this situation or had this transverse myelitis?

I’m confused and totally pee’d off

Thanks in advance

Jen x

Hi Jen

Think about changing your GP.

Transverse myelitis is often the precursor to MS, but it is not the same thing. The symptoms are not those you describe.

TM (often TIM) is inflammation inside the spine that presses on the nerves in the spinal cord. You get numbness in the toes, then feet, legs, torso, and where it stops depends on where the inflammation is.

What you have is what my GP diagnosed as a “mechanical” problem - the tiny protuberances on a vertebra annoying/inflaming the surrounding tissue. He gave me some 400mg Ibruprofen (three times a day with an Omeprazole capsule to take every morning to prevent upset tummy). He gave me co-codamol as well, and said only use these if the others do not work.

The Ibruprofen took the edge of the pain (and they are anti-imflammatories as well) and I had more or less recovered in about ten days. My daughter (a rather senior nurse) said to avoid the co-codamol at all costs.

While I was taking the Ibruprofen I was also having physio, and the therapist went out of he way to avoid putting any load on my lower back whatsoever, saying that there was nothing that she could do that would help - but a lot that would make things worse.

Geoff

Thanks for your reply Geoff,

As i understand it, transverse myelitis causes pain, abnormal sensations (which i have through my ms anyway, but are worse and more widespread atm) and feeling of weak or heavy legs (my legs feel very heavy!)

I have tried ibuprofen but with no effect unfortunately, hence the co-codamol.

I’m more frustrated with the lack of knowledge from my gp than anything else. I was diagnosed just over 4 years ago and not had too many problems thankfully, so still feel quite new to the whole ms situation, and today feel really isolated!

Sorry for the rant, just a low day for me!

Thanks again

Jen x

Hi Jenny,

Your doctor is correct that in someone already diagnosed with MS, it wouldn’t be called transverse myelitis anymore.

I don’t mean it’s suddenly changed what it is, but the terminology changes, because transverse myelitis is only usually used of a symptom that occurs in isolation in someone who doesn’t have MS (such a person may or may not go on to develop MS - time might show it to have been their first relapse, or it may never happen again).

Once we have a definite diagnosis of MS, it’s pretty unusual to talk about having transverse myelitis anymore. It’s not exactly wrong, just a bit redundant - like diagnosing “cough” when the person is already known to have lung cancer. It certainly might be true they have a cough, but it’s ignoring the wider context - and, without further detail, potentially rather misleading.

So with transverse myelitis - if you do have it, then essentially, as a diagnosed person, it wouldn’t normally be called that, and you’d be described instead as having an MS relapse, which gives a more realistic picture of the circumstances.

I have rather the opposite with my doctor - if I go with back pain, she asks me if I think I’m having a relapse. If the doctor doesn’t know, I’m not sure I do, but so far, my reply has always been no, on the basis that it doesn’t seem to be in conjunction with any other symptoms, and I’m pretty confident it’s just mechanical - i.e. an injury. I am more prone to injuries due to poor muscle strength, so I do think my back pain is related to MS, but I don’t think it’s a new relapse every time. I think my gippy muscles have just failed to support my back properly, and I’ve gone and hurt it.

Don’t write of the cocodamol without trying. Without a bit of trial and error, it can be quite hard to determine the exact nature of a pain, and hence the best treatment. When my back goes really badly, it ONLY responds to a heavy regime of conventional painkillers - chiefly codeine, but paracetamol and ibuprofen alternated to the extent allowed.

It DOESN’T respond to neuropathic painkillers (like Gabapentin), and that’s how I can be pretty confident it’s an ordinary musculo-skeletal problem, and not a relapse. I’m sure if it was strictly nerve pain, codeine shouldn’t touch it, and something like gabapentin should. The proof of what kind of pain it is is sometimes what it responds to.

I’ve had similar with my feet. Despite a conviction it wasn’t nerve pain, I eventually yielded to persuasion from my neuro - who thought it was - and agreed to try a course of gabapentin. As expected, it did diddly squat, and I’m back on codeine - which works. So, as far as I’m concerned, point proved - it’s NOT nerve pain.

But it can be very hard to tell without having a dabble, and finding out what works.

Tina

Tina,

Thank you for your reply, you explained everything much clearer than my gp!

I took the co-codamol last night and it made me feel drunk! Had an early night. Took more this morning and after 45minutes started to feel horribly sick! It has lasted all day, and to make it worse, my back pain was only slightly reduced!

Good excuse for another early night though!

Thanks again, your help is very much appreciated

Jen x

I had transverse myelitis, it was my first ever attack. I was completely numb from the bra line down. I could still walk, I just couldn’t feel anything! When the consultant came and told me I had TM my first response (apart from getting her to write it down!) was “but I’m not in pain”. Her reply was that you generally don’t feel pain with TM, it’s more like altered sensations or motor issues. I have to say that what you describe doesn’t sound like TM but I ain’t no doctor!

lisa x