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Hello! A question about blogs.

Hello! I was recently diagnosed with CIS and my neurologist has put me in contact with an MS nurse and is discussing potential treatment with Ocrevus and he said that he is likely to change the diagnosis to PPMS. (There is evidence of multiple lesions on multiple MRI scans etc). My symptoms are pretty mild but when a neurologist asks you specific questions about symptoms over the last 12 months that may have been MS related it’s hard to answer as someone who is a 55 yr old male. Yes, I do go to the toilet more but is that MS related or just a 55yr old prostate? My eyesight has started to deteriorate, but again, could that be normal. I am more irritable and emotional but after a year of lockdown, working from home, not doing things I used to do and missing my friends who wouldn’t be?

Anyway, I’ve decided to start a blog so that I can start to record symptoms etc which may help me, and also be useful for clinicians. Does anyone use an on-line blog site that they can recommend? Is there one on here?

Many thanks.

Hi and welcome. I am 56, diagnosed with PPMS in 2018. I put most of my symptoms down to the menopause and age so I understand where you are coming from. The only symptom I couldnt talk myself out of was the worsening leg weakness and my right foot slapping on the floor when I walked. I wish I had kept a list of all my symptoms as it took me over 9 years of seeing various medical professionals about my leg before the dots were joined and I had a lumber puncture to confirm diagnosis. I now have a neurologist and an ms nurse who keep a record so I dont worry about it now. If you have any other questions about ppms please ask and I will try my best to answere. Karen.

Thank you for the reply, I have my first appt with an MS nurse in July so I’ll be sure to ask about how they record symptoms. I’ve found the NHS website, ms society and ms trust have good information without getting overloading. What I have learned is that everyone’s journey is different so it’s just a case of moving forward with any therapy and managing any changes/symptoms as they appear.