Forum

Limbo/TN/Neuro

Hi everyone

This is my first post on the new website.

I will give you a bit of history. I got optic neuritis in my right eye in March of this year, had an MRI in May and saw a neurologist on 30th June. In between I was sacked from my job because I hadn’t been there long enough before I became ill. My ON has got better, but I still experience problems i.e. flashing lights, particularly at night and halo effects on objects/things when there is a white background so I can’t drive at night, or work on a PC/watch telly for too long. My MRI showed “several focal areas of abnormal signal predominantly within the subcortical white matter of the frontal and parietal lobes and at least two white matter lesions are seen within the periventricular white matter adjacent to the trigone and occipital horn and there is volume loss associated with the right parietal lesion”. It states there is no focal abnormality found within the brain stem and there is no abnormal signal within the cerebellum. It also mentions optic neuritis in my right eye and abnormal signal in my left eye.

The neuro has diagnosed me with Clinically isolated syndrome i.e. I have to have another relapse before I get any more tests done. I have had sensory evoked potentials on my ankles only (I was suffering from numbness/pins and needles in my left foot). I had these done in Southampton General and they came back clear. My neuro said in a letter to my GP that if I had anything wrong then they would have shown up and so I do not have a diagnosis. She said in a letter to me that my MRI results were not consistent with MS because of the shape & distribution i.e.”in particular you did not have any areas of abnormality within the lower bit of the brain (cerebellum and brain stem) which would be more typical for Multiple Sclerosis”. I thought there were 3 or 4 areas of the brain that were MS consistent, the periventricular being one of them - however, I am not a Dr and certainly not a neuro!

I have asked for another MRI, because my symptoms appear to be getting worse rather than better (or I am just noticing them more). She has refused saying it is not her usual practice to do MRI scans routinely in people who have had a clinically isolated syndrome because it’s very difficult to know how often to do those scans and when to stop doing them ! She has, however, given me the contact details of the MS nurse, which was fantastic. I have since contacted the MS nurse and meet her next week. I want to discuss, in particular, the horrendous face pain that I have had for about 3 weeks, which I believe is Trigeminal Neuralgia (TN) and I wanted to see whether I can get painkillers for these (paracetamol just isn’t doing anything for me anymore). Also, I am in the process of changing GP’s as my previous one was unsympathetic and had no knowledge of MS, so it was pointless going to see him for meds, as he had previously told me that he would not prescribe anything unless the Neuro suggested it – so much for support.

My question really is would you consider TN to be a relapse? I have had constant burning in my mouth since 2006 (as well as other things), but this is different and comes and goes like stabbing pains in my temple, above my left eye, along the jaw, and on my cheek/ under my left eye. All of this happens on my left hand side of my face only. I don’t get the pain in all of these places at the same time – they come and go, but are so painful when theyhappen, I have to stop what I am doing and hold on to the affected part. I have never experienced this before.

Also – would anyone here agree with what the neuro is saying about my MRI scan, or should I consider getting a second opinion? I have looked up the neuro’s credentials and she is a general neurologist and more up to speed with epilepsy. I appreciate I am in limbo and it is extremely hard at the moment to come to terms with things, but I know there is something wrong with me and I just want answers to find out what exactly it is that is going on (like most of us in limboland). Should I just take it on the chin and wait to see what else happens, or should I seek another opinion at a different hospital?
Anyway, thanks so much for listening and I’m sorry it’s such a long post. :smiley:
Ness

Hi Ness,

I’m not sure that I can offer you much in the way of advice, but like you I was diagnosed with a Clinically Isolated Syndrome in 2009 and I understand the feeling of uncertainty and wanting to get answers (I still feel like that now!). I also understand the feeling of panic/apprehension every time you experience a strange/painful feeling wondering if it’s another relapse. But apparently only a third of people who have a CIS go on to be diagnosed with MS the rest never have further symptoms, I did but I don’t want to bore you with my story it’s a long one :slight_smile:

I’m pretty sure TN can be a symptom of MS but it can also be caused by a compressed nerve or a cyst. I definitly think you should mention it to your MS nurse because I am assuming that your neuro said no to a further MRI before this symptom appeared? At the moment I wouldn’t ask for a second opinion because I don’t think anyone gets routine MRIs done as the cost outweighs the benefits in many cases, however if after you have reported this symptom you don’t get anywhere then I might be tempted to!

In the meantime I hope that you can get your GP situation sorted out so that you can get effective painkillers.

Take care
Lynn
x

Hi Ness, and welcome to the site :slight_smile:

First of all, yes, TN would count as a relapse. The best med for it (according to my MS nurse) is carbamazepine. If you can wait, then your MS nurse should be able to sort this out for you with your new GP. If you can’t wait, then try your new GP anyway. TN is easy to diagnose, and the treatment is neuropathic painkillers (normal ones don’t touch it) - the GP should be able to prescribe without having a neuro confirm.

OK. Now the MRI & CIS etc.

You definitely have periventricular lesions. The frontal and parietal lesions have been called “subcortical” instead of juxtacortical, so I don’t know if they would “count”. I’d have to see the images. Basically, if even one of them is right next to the gray matter and/or is “u-shaped”, you tick the box for juxtacortical. If you have periventricular + juxtacortical + ON, then you have probable MS and are awaiting another relapse. The TN is another relapse and so the probable MS becomes MS. However, all of this depends on the location of those subcortical lesions.

The stuff she said about the cerebellum and brain stem (the “infratentorial” area) is not completely accurate. Yes, lesions in that area are typical of MS, but many people with MS do NOT have visible lesions in that area. The same goes for the spinal cord. (Have you had your spinal cord scanned?) To use it a lack of infratentorial lesions as a reason to rule out MS is (in my completely unqualified but reasonably well educated opinion) rubbish. It also does not adhere to the latest revised McDonald criteria.

The sensory EP results are not helpful, but they really don’t matter a whole lot for two very good reasons - it is not a very reliable test, and lots of MSers have clear EPs. The fact you have confirmed ON completely blows out the EPs result anyway - well, it certainly should anyway!

So, what to do…

If I were you, I would ask the MS nurse who the MS specialist consultants are that she works with, which ones can prescribe DMDs (disease modifying drugs), which consultant’s generally the best in her opinion. Then I would ask my GP to refer me for a second opinion from whoever came out on top from the conversation with the nurse. (You need to see someone who can prescribe DMDs.)

The alternative to this is to ask the MS nurse all the same questions, but to also ask her what happens now you are clearly having another attack. Can she make you an appointment with your current neuro? If that can happen soon, then it might be worthwhile doing that before asking for a second opinion - because the second opinion may not be necessary once the current neuro knows about the TN. If she still says not MS, or if she diagnoses you but she can’t prescribe DMDs, then ask her for a referral to someone who can. They may not prescribe them for you yet, but at least you know you’re seeing someone who can.

Re your job. Have you checked that the Equality Law doesn’t apply until after a certain time of working for someone? (I have no idea.)

Hth.

Karen x