Forum

primary relapsing ms

Hi

My name is Sherrie I was just wondering if there is any one out there who has been diagnosed with

primary relapsing ms? At first they thought I had relapsing but then I have not got rid of any of the pain etc, 

then they thought I had primary progressive ms and now they are saying I have prms.

Maybe if someone has this they could shed a bit light on it for me please, and what kind of

pain relief medication is there?

I am 23 and it all started last year in April since then I have had to give up my job and move

into a bungalow to help me I have tried so much medication and none of it has worked 

alot have people have said to me I am far to young to have this type of multiple scelerosis

but everyone is different and it affects people in different ways no one has the same symptoms

If there is anyone out there with this type of ms I would love to hear from you

Hi Sherrie, and welcome to the board.hello

Sorry to hear you have been dx with prms and at such a young age. Progessive forms of MS do usually affect older people... but there are lots of younger people who are dx with them... we have a few very young people on here with ppms so as you say it affects different people in different ways.

PRMS does seem to be more unusual, and as far as I know it wasn't even recognised until recently. I think some people with prms are perhaps wrongly diagnosed with 'secondary progressive' (spms) even though they didn't seem to have rrms first (some people with rrms develop spms). Sorry it's all horribly confusing!!!

Firstly, I would say, try and remember that these are all just labels. MS is MS. The main difference, as you've no doubt realised, is that there are some drugs which can help rrms (although not always successfully), as with progressive forms we're more stuck in an area where they can only use pain relief.

I hope you find someone else with prms on here... I have seen people with it on here occasionally but not often.

I'm assuming you've tried all the usual pain drugs... Gabapentin, Pregabalin and Amitriptyline? These can be a great help with nerve pain.

There is one controversial drug... which actually I don't use... but I think you might want to research it. It's called LDN... or low dose naltrexone. Lots of doctors won't prescribe it as it hasn't been subjected to all of the proper tests, but some people with MS swear by it and some people with progressive forms of MS say it slows progression. As I say, I don't use it, but you really need to be fully aware of your options. The best place to read about it is the 'LDN Research Trust' where you can also buy it online.

Hope you're doing ok Sherrie and hope you have support of family and friends? It's well worth coming on here... and the other boards on here.. Everyday Living and also for you Young People. As I say, MS is MS and everyone struggles with symptoms and the emotional impact of having MS. Communicating with others in the same, or similar, boat can help no end.

Take care and hope we see you on here again,

Pat x

Hi Sherrie

I'm still a limbolander at the moment but I strongly believe that I have relapsing PPMS.  It's the only thing that seems to fit.  I'm 50 and have recorded symptoms going back 40 years.  I will be interested to see if anyone else out there has been diagnosed and how they got the diagnosis and how they are doing.

Sorry to hear you have been diagnosed with this so young - hopefully you may have reached a plateau and may be stable now.  There doesn't seem to be much information on this type of MS at all.

Wishing you all the best

Dianne