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.