@mutley64 

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mutley64

Next Steps

Its been over 2 1/2 years since I first visited my Gp concerned about how I was feeling . Thinking back many of my symptoms happened many years before this that I put down to stress being overworked clumsiness and menopause and fatigue. In January 21 after my first MRI I was diagnosed with "probable ms" scans showed central demyelination brain lesions and a c spine lesion at C2. My Neurologist thought I may have had MS for some time . Second scan showed no changes. I had a lumbar puncture but that didn't show anything so didn't help with diagnosis. I received a letter following my 3rd scan which states several brain lesions and plaque at C2 plus degenerative changes C3 to C7 and bilateral root nerve impingement at C6/7. I've had no contact with Neurologist since May before my latest results. He did mention that he thought my MS had burnt out. I've now got a telephone consultation with MS specialist nurse tomorrow morning and I'm wondering what I should ask ? I assume I'm still in limbo land as the letter doesn't state " new " lesions and no mention of diagnosis. I did ask my neuro after my first scan how many lesions I have but he said words to the effect it doesn't really matter. I also asked at the time if it could be anything other than Ms and he said no. I was given access to a MS specialist nurse after my first scan. I've been unable to work for 18mths due to my symptoms and I'm fortunately being paid 2/3 of my salary from my employers income protection policy. This was after a fight with Insurers that took 12mths to resolve. I suppose I just want a definite diagnosis and to get treatment if it's available. I sort of feel as I've been written off as I don't tick every box . I don't really say how bad I sometimes feel as I don't want to worry my husband and I try to push through as much as I can but it's difficult. Sorry for the long post if you managed to get this far. Any thoughts on what I should do next please or should be asking my nurse ? Thanks for reading
@Clary

It sounds like you have been diagnosed with MS? Have you been told whether it is PPMS or RRMS? This will mean that certain medication is available. I would definitely look at the NICE guidance online. It may have some information 🤷‍♀️. If they aren’t giving treatment, perhaps ask why? Super difficult to challenge a Doctor/consultant. If you feel wronged definitely speak to PALs at your hospital, they might be able to help. Good luck.

@mutley64

@Clary thank you for your reply. I've not been told so will clarify with nurse this morning if I've been officially diagnosed. When my husband asked Neuro at initial appointment he said ms is ms and he didn't think labelling it was helpful ! That was over 12 mths ago.