Hi Baffled, if you had RRMS and it became progressive, it will be secondary progrossive. Primary progressive starts off as progressive. In other words it never starts as RRMS.
Sounds as if you are having a really bad time and I’m sorry to hear it.
Have you seen a neurologist recently? You really need to see one to see if you have secondary progressive and to talk about treatments you could have.
There is a drug called LDN … low dose naltrexone. Not many doctors will prescribe it because there haven’t been enough studies on it, but some people claim that it helps their symptoms and slows progression down. I don’t use it myself so I’m not recommending it, but if you are interested you should look into it. I think the best site to read about it is called ‘The LDN Research Trust’.
But first I would recommend you see a neurologist and find out exactly what your diagnosis is and what is available to help you. If you need to talk to someone there is a helpline on this site. The number is 0808 800 8000.
I really hope things get better for you soon and you get some answers. I know how frustrating it can all be.