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Transverse Myelitis diagnosis - help!!

Hi everyone,

I am a newbie to this excellent forum and so grateful to be able to talk with people who understand what the limbo period is like leading up to diagnosis!

I was fit and healthy until 4 weeks ago when my legs lost power and I was diagnosed with transverse myelitis after a week in hosptial.

My neurologist tells me I have an 80% chance of either having or getting MS due to spinal lesions and an abnormal brain MRI.

I have done a huge amount of MS research since and am so impressed with the incredible progress that is being made with DMDs! Surely they may have a cure for this in 10 years time!

I am quite resigned to the fact that I will be diagnosed with MS due to other symptoms that have raised their ugly head following my discharge from hospital e.g buzzing legs and buttocks!

If this is RRMS then I am quite positive about things - there seems to be an incredible amount of support out there for MS and some great people who are truly inspirational with their bravery.

But - I do have one concern that is really scaring me. Could I have ppms because I am a little older (just turned 35?) I can def cope with rrms but would be terrified of things moving more quickly with ppms as i have two very small children…

I have read that ppms involves less inflammation of the spinal cord - and my transvere myelitis diagnosis is exactly that - spinal cord inflammation!!! So I am so hopeful that I will fall into the RRMS diagnosis (if I get a diagnosis at all!)

I guess I am just worried that it could be an early sign of ppms because I am a little older… and also I have more spinal lesions than brain. (I have 2 definite ones in the spine with a few “possibilities” of others but only one inthe brain)

I have never suffered with any other MS like symptoms previous to my transverse myelitis adventure 4 weeks ago!

It would be so great to hear from anyone who has been in a similar situation or has an opinion on whether a transverse myelitis diagnosis would make it more likely for me to develop rrms rather than ppms due to the inflammation - that would make me so much more relaxed about the whole thing!

Many thanks for listening to my ramblings

Keirax

hi keira

i was diagnosed with rrms the week before my 50th birthday so you are not old.

when is your next appointment with your neuro?

keep a diary of symptoms - when started, if it went away etc.

meanwhile try to relax - it’s most likely rrms than ppms.

​i prescribe lots of cuddles on the sofa with the kids

carole x

Ah, Carole - you are an angel. Thank you so much for replying and your lovey reassurance!

How were you diagnosed if you don’t mind me asking? Is your MS livable with? I feel so reassured by all the amazing advances they are making with treatment etc. I honestly feel quite calm about the whole thing. Fingers crossed it is rrms and not anything more progressive

A diary is a great idea - will start doing that

Thank you so much again

Kxx

Hi Keira,

The suddenness of developments suggests that this is a distinct episode or relapse, not a progressive condition.

I don’t think, with PPMS, you’d have had absolutely nothing up until four weeks ago. You’d have had a history of declining health.

Although educating yourself about your condition is good, sometimes a little knowledge is a dangerous thing, such as the perception that “older” people will almost always have PPMS. I was diagnosed at 44, and even a GP friend who herself has MS said: “How old are you? Hmmm, PPMS I should think.”

She was wrong. I had (with hindsight) a clear pattern of distinct episodes I’d never been to the doctor about, and the one that led to my diagnosis was more of the same - albeit a very long one, lasting a year.

I’m now almost 49, and still officially RRMS, even though I haven’t had a relapse for ages.

As an aside, you can’t ever convert from RRMS to PPMS (unless they’re admitting it was a misdiagnosis in the first place), but most people with RRMS do eventually transition to secondary progressive. However, despite my own suspicions, I’ve so far been given no official indication that’s the case yet either. So 49, and still firmly in the RRMS camp.

Tina

x

Hi Tina,

Thank you so much for your reply and I am so glad that you are still firmly in the rrms camp! Such great news!

And you are SO right about a little bit of knowledge being dangerous - I am so bad at trawling Google for information and its beginning to mentally exhaust me!!

If you don’t mind me asking - how did you eventually get diagnosed? What are the main challenges that you face in your everyday life?

I have been reading so many amazing stories about people with rrms who never end up needing anything other than a walking stick etc… in later life. It also seems that the advances they are making with treatment are incredible -this all gives me hope!

Kx

ok keira

here is my story:

started with severe pins and needles in my right foot.

after a few weeks i googled it (you’re not alone in using dr google). google told me that i had some circlatory problem that could lead to amputation.

after a couple of sleepless nights i went to my gp.

he said i was definitely not going to have anything amputated, ran a lot of blood tests and prescribed thiamine tablets.

thiamine is one of the B vits. the pins and needles went away.

a few months later they came back worse than ever and also in my left foot and both hands.

he referred me to neurology.

MRI showed lesions and abnormality (which made my hubby chuckle - the abnormal bit).

neuro wrote to tell me that it was highly likely to be ms.

had lumbar puncture and started on copaxone.

​just over 12 months from start to finish - not bad eh?

i’ve been mostly fine, with patches of fabulous, and bits of crappiness,

​still walking but it’s getting painful now.

i’m just coming up to 7 years.

carole x

There is a lot of information out there that MS should be treated early to stop further attacks. The idea of waiting and seeing is now becoming old fashioned. Motto now is treat early, fast and aggressively according to top UK neurologist - Prof Giovanni at Barts.

Transverse myeltitis is usually one attack on the spinal cord so tthe fact that you have brain lesions as well increases your chance of it being MS.

I often wonder is the idea to wait and see is better off for the patient or the NHS budget bottom line.

Sorry to be blunt but if I wear you I would demand treatment

Moyna

Hi everyone,

Thank you so so much for your replies.

Ann - what you say makes me so happy - you are SO right about parenting and the kinds of things that really make a difference to your child. I am going to take that on board right now.

Moyna - I have been doing so much research on this and I feel I am going to be in with a fight to get my DMDs before diagnosis. But if I dont get them and I am going to ask for a second opinion. I was originally given an appointment 12 weeks after my spell in hospital but since I have been hving “buzzing” in my legs I went to my gp and my appointment has now been brought forward my 6 weeks! Hooray!

I am going to push so hard to get those DMDs!! Will let you know how I get on.

Carole - so glad you are still walking - you are an inspiration! Do you need to use a walking aid at all? Do you find that your husband is totally in tune with you or do you sometimes have little MS related niggles? I am finding already that my husband doesnt quite “get” what I am going through although the poor old thing is certainly trying!!

Thank you so much to all of you for replying to me - I am so grateful.

On the positive side of things (!!) my husband took out critical illness cover recently so my diagnosis will at least bring some welcome funding (the policy also has no “time limit” that needs to go by before we claim thank goodness! only a pre exisitng conditions/symptoms clause.

Actually - I also wanted to ask you guys - do you think that the critical illness people will look back throughmy medical history and try to find any excuse to get out of paying?? The policy was done through my husbands work meaning that we didnt have to fill in a medical background form.However, after my pregnancy with my 2nd child I went to the doctor feellng a little run down and also mentioned I had some passing leg cramps (big baby!) This was a one off appointment - never looked into further as they went away. You dont think that one off thing could be comsidered a pre existing symptom do you?? I have ever had any numbness/tingling/vision problems etc… Surely everyone has experienced a solitary leg cramp at some time in their life?? Especially after pregnancy??

Im so hoping they dont try to wriggle out of it as we will rely on that money so i dont have to work moving forwards etc… if the worst happens

Kx

I meant NEVER had any numbness/tingling/vision problems etc!!