Confused please help.

New diagnosis and before diagnosis
1

Hi all,

So in june i was in hospital (RVI) if any of you know it and long story short after MRI x 2 and a lumber puncture i was diagnosed by one neurologist as having ms and another as having cis i was put on steroids drip for 3 days and sent home after a week. A couple of weeks later im going down the pan cant walk properly numb feet and so on, given an emergency MRI scan the following day and saw the same doc who said i had cis not ms hes now saying ive got transverse myelitis does this mean hes now coming round to an ms prognosis.

Im in the army and am in with my MO (medical officer) tomorrow morning any guidance help or input would be great.Im having problems walking am still numb in feet and my eyesight is blurry.

Regards for input.

Iain.

2

The thing is Iain, Transverse Myelitis and MS are different.

Yet many people are initially investigated for TM and eventually diagnosed with MS. So it’s a tough one.

You’d think that the army would be one place that you wouldn’t have any arsing about with doctors. But you’re actually in the same boat as the rest of us!!

This is what I found about TM: Transverse Myelitis Fact Sheet | National Institute of Neurological Disorders and Stroke

​The one thing you’ve said that doesn’t seem to fit with TM (from a layman perspective) is that your eyesight is blurry. It looks to me that TM is all about the spine, therefore lower body is affected. Whereas MS is both upper and lower body. And the optic nerve is of course brain centred rather than spine.

So I’d be questioning whether it was transverse myelitis on the basis that it affects you above the spinal level. Obviously I’m not a doctor, I’m just looking at things from an MS perspective and with the aid of Google (and we always tell people or stay away from Dr Google, cos he’s crap).

Just remember that I’m your average numpty. I don’t know much apart from that which is definitely MS centred.

Sue

3

Hi Iain

Firstly I am local to you and am under the care of a ms consultant at the RVI. I was also diagnosed with transverse myelitis in December 2016 so understand your dilemma.

As said already TM can be classed as a CIS in some people, however I had opthalmic neuritis many years ago so TM can also be an inflammatory event at any stage.

I understand that your third MRI scan aided the diagnosis of TM. If it is helpful I can vouch for the development of inflammation in the spinal cord over anything from days to months, so can understand how the changes in your MRI can change the name of the diagnosis.

I can also add that I had a kelidoscope type visual change at the same time as my TM, there was also some inflammatory lesions seen in my brain as well as cervical and thoracic spine at C2-5, T1 and T5 which caused many neurological and mobility problems.

Did they tell you what was actually seen on your MRI’s, that might be helpful for you to connect the symptoms that you have had?

Have the neuros arranged any follow up? Have you been referred to see a MS consultant? At the RVI they are neurologists who deal only with MS patients, whilst other neurologists will treat a CIS and not necessarily refer a patient to their specialist colleagues.

I’m sure your MO will be understanding, (I’m also retired military) and should be able to refer you to one of the MS consultants if necessary.

There are MS nurses, who are part of the MS team at the RVI, to whom you can talk too, you can self refer. Their phone number is on the NUTH website. The admin will take details from you, but be sure to ask for one of the MS nurses to call you back whether you have been referred to the MS team or not.

I can say that I ended up having two lots of steroids 6 weeks apart and was then put on a DMD. Here we are six months later and I am so much better, so keep your ‘pecker up’ and good luck. I hope this information is of some help to you and if you feel your symptoms are getting any worse then ask for a early review at the RVI.

Katie