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Treatment choice

Hi All

Please help.

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.

Jo

Your GP might be a useful ally here. The specialists are only interested in their particular bit of you; a good GP is interested in you as a person and should be able to advise on dealing with the silo mentality of the hospital specialists.

In the meantime, I think the important thing is to keep putting things in writing, copied to others in the loop as appropriate. For instance, I would write to the neurologist, copied to the MS nurse and your GP, to confirm that that you await the outcome if his discussion with his consultant haematologist colleague about issues relating to DMD choice for you before you proceed.

Alison

Thanks Alison I have kept a record of every visit and conversation.

I will try my GP.

Jo

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