I haven’t posted for a while, but visit regularly. I hope you are all well.
I had Optic Neuritis in March of last year, ophthalmologist referred me to Neuro and sent me for an MRI, which I had in May. Saw Neurologist end of June who said the lesions that presented on my MRI were not typical of MS. I had loads of blood tests and EPs, all of which were clear. After ordering a copy of the MRI myself and with the help of Rizzo (Karen), determined that I do have several (over 9) subcortical lesions, including periventricular and Juxtacortical lesions, but the neuro has dismissed these as not being typical of MS, and because I didn’t have any lesions in the cerebellum or brain stem, I probably haven’t got MS!
I spoke to Neuro on the phone in November because of new symptoms, who suggested I have a second MRI, with contrast. I had this on 28th December and yesterday saw the neuro who said there were no new lesions and nothing had changed since my last MRI in May. This, you may think, is good news, but for me it was the worst news possible! She said no more about it, didn’t take me through the scans or anything.
I have been experiencing no end of symptoms since ON, including Trigeminal Neuralgia. I mentioned to the neuro that my mobility was getting worse (in fact I had a whole list of new symptoms in my bag which I had prepared for the consultation – but completely failed/forgot to show the neuro or talk about them!), but the neuro said that because my EP’s came back clear there was no evidence of mobility problems. When I said that EPs were not 100% proof, but simply an aid to diagnosis (because if they were, we all wouldn’t be going through so many tests to get diagnosed), she didn’t like it at all, as I was obviously questioning her diagnosis (which to be honest I have done since day one!!). Anyway, she seemed to be in such a rush during the whole consultation (which lasted about 10/15 minutes) and just said she cannot go any further with investigations, I still have a CIS (clinically isolated syndrome) diagnosis, and wanted me to be referred to an MS Specialist for a second opinion! I was delighted to be honest, as I had previously mentioned a 2nd opinion to my MS nurse (who copied my email to the neuro - so much for patient confidentiality!!!). I will now have to wait for an appointment at Southampton Hospital with an MS specialist, which will probably take months.
So I am still in limbo, totally frustrated, depressed and waiting for someone to tell me what the hell is going on with my body!! If its not MS, what is it?
Sorry for the rant, but I am so fed up with everything.