After 2 years of tests including blood test, scans, physio, Nerve studies, lumbar puncture I have finally been diagnosed with RRMS.
I have a team including a MS nurse a neurologist (who I see at a local hospital) and a MS specialist neurologist (neurology hospital).
My problem seems to be that the care is very disjointed.
I recently saw my MS specialist neurologist regarding starting treatment, I have been offered beta interferons, copaxane, tecfidera, teriflunomide or lemtrada.
My issue is I have had a splenectomy and all these treatment affect the immune system therefore I mentioned it to him to which he replied he I was the first patient he had with MS who had also had a splenectomy but he didn’t think it would be a problem but he would speak to an haematologist.
I am fortunate that I work in a haematology department so I spoke to the consultant haematologist who I work with who said that whichever I decide I will be at 20% more risk of infection and my MS specialist neurologist should be speaking with a haematologist regarding any treatment I am offered.
I then had an appointment with the neurologist (not MS specialist) who I see at my local hospital who was trying to push me for a decision on the treatment I wanted to try. I explained that I had seen my MS specialist who said he would contact an haematologist and I wanted to wait for the haematologists input before I made my decision. But when he looked back over my notes he couldn’t see any reference to speaking to a Haematologist.
He then said he would speak to the haematologist who I spoke to in my workplace (who doesn’t work for the same Trust that I am receiving treatment from), this makes me a bit uncomfortable as things may be missed in my notes
Since I saw him I have had 2 letters asking me to contact my MS nurse to give her my decision on my treatment choice but have still not got any idea of what the haematologist has recommended.
I don’t want to make a decision without the full facts.