Has anyone else had this experience?
I went to special MS neurologists yesterday in Newcastle, living in the Lake District and MS is what I have been initially diagnosed with. Now the MS neuro has said my case isn’t just as black at white as my MRI scan shows some inflammation but I am not hitting both criteria at this point to have a diagnosis of MS and doesn’t want to give me it yet due to the DMT being really invasive and can actually sometimes cause death in some instances. I did have a lumber puncture back in October however when they done it in Whitehaven near me, they didn’t have enough fluid and as a result couldn’t test my Oligoclonal Bands which is the most important test within a LP to determine if I would of had it or not (the ms specialist, said he would of started with the Oligoclonal Bands first if they didn’t have enough fluid to start with) Anyway they told me in Whitehaven that it initially was negative, but was told this information yesterday about them not being completed. As a result of this he has said in 6 months to do another Lumbar puncture which can help with me getting a diagnosis sooner but there is also the possibility it can come back negative and I still have MS, so he arranging another MRI in around a years time, and in the future also as he has said it’s something that could develop into MS if it’s not already. He also mentioned as when I was living in Southampton had I had an MRI went into hospital with my first issues with my mobility, walking like Bambi; they would of been able to have a  comparable scan to go off which which again would of been able to determine with a full diagnosis. He has diagnosed me with FND but said there’s a possibility that I do have MS as well he just can’t give me that diagnosis as of yet, because he doesn’t want to cause more harm than good so I could have FND and MS or just FND with an abnormal MRI but would need to monitor me in the future. But the thing that has caught everyone is that my MRI scan is abnormal, hence all this happening now. Has anyone else been through similar?
Don’t be scared, just let them do another lumbar puncture may be 6 months or a year. It’s fine,but the time being review your diet. No more processed foods, decrease sugar, go gluten free, eat healthy and you will be fine
Although my first MRI found many lesions in my brain and a couple in my spine with demylination indicative of MS I didn't meet the Mcdonald criteria. I met dissemination in space but not time. My neuro said it couldn't be anything else and diagnosed "probable ms ". He arranged a lumbar puncture but that was inconclusive so couldn't confirm my diagnosis. His first advice was to begin taking Vit D3 4000ui and he assigned a MS nurse to me who helped with my symptoms and arranged medication and physio. I had a number of MRIs over the years which showed no changes. It took 3 years until a MRI found a new lesion and I then met the criteria and a formal diagnosis was made and I began a DMT. It can take a long time but if you have MS it will eventually show itself. Try to get on with your life as best you can . I know being in limbo land is a worrying and frustrating time. If you get any new symptoms contact your neuro and any questions you can ask on here. I found people very helpful. If you need any information or advice you can also contact MS Trust and MS Society. I hope you get help and answers soon . Take care and let us know how you get on.