i have had relapse remiting ms since 1999 and since november last year my eye consultant is convinced i have either primary or seconadry ms what is this beacuse i only just got a speaclist ms appointment and treatment to keep me for sueing the arse off my local nhs trust for not treating but im focused on slowing it down it as really gone awol and im in mess
Hazey is not fantazy
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.
Pat x
Hi, Pat has offered you some very good info and advice.
I wouldn`t have thought an eye doc has enough experience/knowlwedge to tell someone what type of MS they have. Maybe you should speak to your neuro about this, eh?
luv Pollx
hi to poll and pat
I attend a yorkshire eye hospital and when patients attend with ms or a disease that effects vision they bring in a consultant in that field so they care for you at there best and it is fab worth the travel time. Why other NHS have not done this im confused
hazex