Help please, new to PPMS

Primary progressive MS
1

Hi All,

Haven’t been on for a while but I do read your posts regularly. I wonder if anyone can help me please?

I know we are not doctors but I think sometimes we can help each other more than they can.

I have been told I have PPMS, not the RRMS that was originaly thought in 2008. As there isn’t any treatment for this type I only see a specialist every 18 months and I do not have an MS nurse.

My legs have been affected since 2008 when I had my first big attack. However, now I have problems with my arms. My shoulder is very stiff and painful and it is now difficult to use that arm a lot. My GP said to rest it, she is not sure if it is MS or something else. I also have painful, weak wrists and it is hard to use them to lift things. So all in all I seem toi have problems with lots of things at the moment.

Is this how PPMS can manifest itself? Have your legs/arms started getting weaker and more painful? Anything I can do to try and help myself? I have physio but I can’t take many of the painkillers as they make me very ill.

I just feel so in the dark about how PPMS can change and progress.

Any help would be gratefully received.

Enjoy your evening all,

Anne

2

Hello Anne

Eveyone’s form of MS is personal-just like a snowflake, no two being the same. There are quite a few suggestions for easing of symptons passed about on the forum. In my experience doctors and neurologists struggle to define (as opposed to identify) symptoms and will often try to offer some strand of hope to cling to. It would be a good idea to ask about an MS nurse-they are usually very kind and helpful. Remember, MS can affect your life but not neccessarily ruin it as long as you’re realistic and make use of the things which can help, (cue physio and MS nurse). You also find out who your real friends are. My PPMS has meant a gradual dterioration of my faculties over the last 30 years. I have pain and spasms etc but I’m still ‘AVIN’ IT LARGE. I really meant to say that I’m maintaining a good quality of life but I just felt like writing ‘avin’ it large!

Best wishes, Steve

3

Hi Anne, nice to see you on here again… but sorry to hear that you are experiencing pain etc.

The problem is there are not DMD (Disease Modifying Drugs) for PPMS… so the drugs that are used are to help with symptoms… pain, stiffness etc.

With RRMS, DMD’s can help to reduce relapses.

As Steve says, MS is like snowflakes (I like that Steve!!) each one of us experience different symptoms. So, I’m sorry to say, yes, what you are experiencing does sound like symptoms of PPMS.

If you think of your brain as the computer that runs your whole body… from thoughts to emotions to movement & physical sensation… and then imagine that computer as damaged in parts… then you can see how everything in your body can be affected. Messages to the body get blocked or they get mixed up. But the brain can often find ways around the damaged bits… that’s when a symptom can improve or go away. Sorry that’s a very simplified explanation and I don’t mean to be patronising… but it’s the only way that I can understand it myself.

Along with all that, your immune system sees the MS damage as a foreign body so it attacks it. That why it’s called ‘auto immune’… it means that your own immune system is attacking your nervous system in your brain. That’s why we feel so damned ill all the time and why the fatigue is so bad. It’s a bit like having flu all the time… when your immune system is fighting the flu virus.

So although we don’t have remissions, symptoms can still come and go. I used to suffer a great deal of pain in my left shoulder and upper arm… it went away and (touch wood) has not come back. So symptoms that are bad at the moment won’t necessarily hang around forever.

Anne, what med’s are you on?

Also, look back on posts on here. There’s quite a bit about a drug called LDN. See what you think.

Take care hon and apologies for long post. I hope it makes sense.

Try to remember the ‘one day at a time’ rule. None of us know what will happen in the future, so try not to think of it. It’s really the same for every single human being on the planet but MS makes the ‘not knowing’ worse.

Pat x

4

Hi Anne.

I was originally diagnosed ppms in 2010. then last year rediagnosed spms. so I am the same but opposite. my arm started by being difficult to lift and hold up and i was clumsy with small things like coins. now i can’t use it at all. i got special arm casts like u use when u have a break to check if it was just muscular first from the physio. Sharp pains across both shoulders and down your back is familiar too. lasts about 2 to 3 weeks then settles down. carbamazepine helps me together with aspirin if its bad but started on that for the tn. no cures sorry. I was working full time a year and a half ago. Now electric chair and one arm. but as the others say everyone’s different. its ms alright but ppms or spms seems irrelevant after a while. its irreversible and theres no cure either way.

chin up

lucy