can anyone help!

New diagnosis and before diagnosis
1

Hi,

Was just wandering if anyone is able to give me some advice?

I was diagnosed with Transverse Myelitis in August last year. Lesion at C1 on spinal cord and had positive brain MRI and Positive Oligoclonal bands in CSF. Are oligoclonal bands normal in TM or is it more of an indicator in MS? Also I am just struggling with what I can expect (normal for TM) in the way of recovery & symptoms still 7 months on. I know, as my consultant says it is early days, and recovery can take up to 2 years, but what symptoms are normal? I still have a lot of parasthesia in my left arm/hand, worse when hot & loss of sensation in left foot. I am on pregabalin for pain, although this pain fluctuates and isn’t managed that well with current dose. Following exercise or hot shower I have worse tingling sensations down both legs and both hands, horrid! I struggle with awful fatigue at times, again is this normal 7 months on? My right arm which was only mildly affected back in august has, probabally since December got weaker, very difficult to explain, a bit clumsy, am dropping quite a few things. Did mention to Consultant in January but he dismissed it. Symptoms initially started in my right calf back in august and then developed from there to my waist down to both legs, my left arm, neck and left side of face. Some initial symptoms like in my Right calf completely dissapeared but after five months are back, is that normal? It has been a very unsettling time as had episode of severe vertigo in October, repeat MRI showed no new lesions. I now have blurred vision, hoping just need glasses off to optician today. I have struggled getting clear cut information from Gp & Consultant, feel like a nuisance and just want it all to go away! I believe the TM is classed as my first clinically significant episode. Sorry to go on but would be grateful for any info or advice.

xxx

2

Hello and welcome to the site

My first question is whether your neuro is an MS specialist or not? I’m wondering this because when you say a lesion at C1, a positive brain scan and a positive LP, you are listing results that would suggest a first episode of MS and not TM. The main reason for this is your spinal lesion being “at C1”: TM lesions by definition need to be at least two vertebrae long (so, e.g., C1-C2). If he is an MS specialist, I’m wondering whether or not he is being straight with you, although I can’t think why he wouldn’t be.

Are oligoclonal bands more an indicator of MS? Yes. Sorry. People with TM who have a positive LP for oligoclonal bands are much more likely to develop MS. (Adding a positive brain scan to that increases the odds further. Sorry :frowning: )

I don’t know a whole load about TM, but if we assume that your TM is actually a first attack of MS, there is still time for things to improve. For example, I know of MSers who have still had improvements 18 months or longer after a relapse. I think you should probably accept that some of these symptoms are here to stay though. Many of us struggle with fatigue and heat sensitivity when we aren’t relapsing, and many of us have ongoing symptoms as well as others that come and go. The fact that you have these symptoms now does not mean that you will always have them though - just about the only certainty about MS is that it is completely unpredictable! You will also learn how to deal with things with time and experience. Getting the right meds is a big part of this. (If your pregabalin dose isn’t enough, then please speak to your GP and/or MS nurse if you have one so you can increase it. Dealing with pain and difficult paresthesia is so draining - sorting out that one thing may make your life much easier.)

Try not to worry about the increase in symptoms with exercise and showering - it isn’t dangerous or the sign of extra damage; it’s a temporary effect that will go as your body temperature lowers. Make sure you keep well hydrated and cool when you exercise and don’t exhaust yourself - this will reduce any side effects.

I’m very disappointed that your neuro is dismissive of your concerns with your hand, and that he is relying on MRI to see if your “TM” is progressing. If your vertigo was severe and observed by a medical professional, then it could be counted as a second attack regardless of the MRI results, especially as vertigo is caused by damage to areas that do not scan well.

Do you have a copy of your original MRI report? How many lesions do you have in your brain? Where are they? These things are very important.

Blurred vision is very common in MS, but is unrelated to TM. Hopefully yours is something that a new set of glasses can fix, but it would be sensible to get it checked out by an ophthalmologist if the optician is remotely puzzled by it.

Hth! (and isn’t too overwhelming!)

Karen x

3

Hi, and thank you.

Thank you sooooooo very much for your reply.

My Neuro is an MS specialist, just not very communicative. I have never felt well informed and it is always a struggle to get clear information from him. Once you leave the consultation room you realise there are so many questions that just didn’t get answered clearly.

Discharge letter gave me initial scan result. It said my scan showed ‘foci of high signal in upper cervical cord and several discrete foci of high signal within deep white matter in both cerebral hemispheres’ diagnosis - Transverse Myelitis. I recieved my LP results a while after, again was left to wonder about how this fits in with all my symptoms and scan results and what it meant. Asked about relationship of og bands and all he said was that it shows inflammation. So none the wiser at that point. Thank you for your info!

Then there was the vertigo episode which came on slowly over several weeks, with some horrid visual disturbances this came to a head with a acute episode of spinning followed by several weeks of recovery with the feeling of everything being at an angle. Saw GP throughout all this (who thought herself this was a second episode).

Managed to get second MRI following the vertigo, 3 months from first scan - was told by consultant -No new abnormalities, some improvement.- told me some area of high signal in brain had reduced. I did ask about risk level of further episodes, he said that as had ‘positive’ brain MRI I was at high risk. See me in 4 months. If all ok then he wouldn’t need to see me again. Help! is that normal, sounds scary to be left.

That is really what I know with regards to the scans. Think Consultant is thinking the TM is a Clinically Isolated Syndrome and no more to do unless I have another episode. Am seeing GP tomorrow, will ask for details of scan so I have a copy. Could have option of second opinion would you?

It has been a very lonely time and I have been very low on and off. I am sure it has a lot to do with lack of knowledge and worrying about what I think I know! Is there anything else I should know, should be asking?

Thank you again

xxx

Oh, went to optician, need glasses - at 38 i’m not a spring chicken anymore!

4

Hi am sure Karen can go through your results with you but I agree a second opinion would be good…after all its your body and you need to know what is what!! If your current neuro isnt confident to reconsider his intitial TM disgnosis then its time to see someone else. I too have had terrible vertigo…back in 2010 when my neck pain and probs started. MRi showed a sliped disk but the vertigo has pretty much stayed since then…and at times it has been very bad and as you describe…its awful to experience…it may be worth your gp checking your ears also as if crystals get dislodged from the ear canal they can cause vertigo too…mine were fine and now the neuro eye people are saying they think the vertigo is brain related as opposed to neck…although the brain is involved to an extent.(vestibular rehab therapy can help some forms of vertigo…I was having this but not finding it helpful at all and have to put it on hold till I see the eye neuros again) Glad you got your eyes checked… hope you feel a bit brighter soon…no one likes to feel low and the lack of answers and information about your problems isnt helping…do let us know how you get on.

e

5

Remember, I am not a neuro - I don’t even have a medical degree!

The diagnostic criteria for MS are dissemination in time (which basically means more than one attack) and dissemination in space (which basically means more than one part of the central nervous system being affected). TM is considered a clinically isolated syndrome, which means that it is a single attack affecting a single part of the nervous system (i.e. the spine). The dissemination in space criteria can be satisfied by having a single lesion in a typical MS area in the brain as well as a single lesion in the spine. From what you know about your MRI, you have more than one lesion in your brain. Unfortunately, there’s no way of knowing precisely where they are without looking at the images so it’s impossible to say whether or not they “count” towards the dissemination in space criterion for MS. If they do, then a diagnosis of “probable MS” would be more appropriate. [We also don’t know just how long that spinal lesion is. The description “at C1” just doesn’t fit.]

Your vertigo episode is very typical of MS. Of course, relapses vary massively, but the gradual build up and gradual recovery is very familiar. The dissemination in time criterion can be demonstrated by a new lesion in the absence of new symptoms, but that is no reason to insist that a relapse is only demonstrated by a new lesion. In fact, that is b*******! NHS MRI is simply not good enough to pick up many lesions and some relapses affect nerves that do not show up well on even good MRI. I really don’t get your neuro’s dismissal of it. I also don’t get the whole discharging you thing either - I think the neuro should have at least referred you to an MS nurse.

You can request a copy of your scans and the radiologists’ reports from the hospital that they were done at. There is a charge when we get them ourselves (£20 or so usually), but your GP may be able to get them for you for free. Worth asking at least!

Would I have a second opinion if I were you? If the MRI reports suggest probable MS rather than TM and this neuro has discharged you, then I think yes - at least you might get put on someone’s list properly. Perhaps your GP can advise though? Maybe there is some local thing behind the discharge and you will be able to see the neuro quickly if something else happens despite what it says on paper? I don’t get the lack of an MS nurse though. That’s what I would be pushing for, more than anything. Neuros get seen occasionally. MS nurses are the ones we & our GPs work with to get meds, etc worked out. They are the ones that we report relapses to and they are the everyday conduits to our neuros. If you have a really on the ball, supportive GP, then it isn’t such a big issue though. Sorry, this is all very woolly!

There is a chance that it could be cleared up by your GP writing to the neuro to ask for his opinion on your status versus the dissemination in time/space criteria (taking into account your MRI results and your episode of vertigo, that he himself observed) and also requesting that you are referred to an MS nurse to get support for ongoing symptoms. [Your GP may be able to refer you to the nurse btw - worth asking.] If your GP doesn’t want to get involved, you could try writing yourself.

The most important thing you should read and understand is the Polman et al (2011) paper on the 2010 revisions to the McDonald criteria (the “gold standard” diagnostic criteria for MS). You can download the pdf by clicking on “Get PDF” from here: http://onlinelibrary.wiley.com/doi/10.1002/ana.22366/abstract

If I were you, I would take a copy of this along to the GP. He may not know about it and it may help to get him on your side about getting your diagnosis and ongoing support sorted out.

Hth!

Good luck with the GP.

Kx

6

Thank you,

Really appreciate your time & comments. Will let you know how I get on!

xxx

7

Just on quickly cause on phone and find it hard to type. I had a brain and neck mri that showed a lesion at c4. Then I had a lp that was positive. With this, 4 relapses in a year that suggested more lesions on my brain my neuro diagnosed rrms. He is starting me on DMD in a few weeks. Don’t know if this helps at all and hope it didn’t scar you but thought you should know. This was a couple of weeks ago. Lindsay x