For years I have been having all sorts of strange and different symptoms. I persevered and finally got appointment to see a neurologist. I took a diary of all my different symptoms. After a couple of visits the neurologist admitted that he hadn’t got a clue what was wrong, but he would send me for an mri but didn’t expect it to show anything. I had my mri and got appointment back for Feb 2019. The neurologist said he was shocked to find demylation on my scan and told me that I had ms and that it was probably PPMS. I was then referred to the ms team. I waited over 3 months for my appointment with another neurologist. Whilst waiting I went to a coffee morning and accidentally met my local ms nurse so I showed her my letter that I had got from my first neurologist as he specialised in Epilepsy. I finally got to see the neurologist with the ms team.
At my appointment in May I just had the same neuro assessments again that the first one had carried out. I was then told that I would have bloods, mri with contrast and lumber puncture. I had mri at the end of June and LP beginning of August.
I’m still waiting for another appointment to get my results.
Since my initial diagnosis in February I just got my head down at work and tried to forget about it. Then after my LP I wasn’t very well and was struggling with severe headaches. I think this is when reality hit me and that I could no longer bury my head in the sand. I’m frustrated, angry, and very scared at the moment because I haven’t got any answers. My mood is at an all time low. I’m scared of eventually becoming a burden to my friends and family. I don’t have any children or a partner. I am the main carer for my elderly father that doesn’t understand my diagnosis.
My ms nurse has been absolutely brilliant but she is as frustrated as I am waiting for the results. At the last meeting with her I was showing signs of a relapse. But still not heard anything back from neurologist with regards to going on steroids. That was over 2wks ago.
Sorry for the long post. I was told it would help to write down my feelings. Looking at previous posts you have all been very helpful and understanding to other members , so I thought I have nothing to lose by writing this post.