I wanted to ask if anyone had their diagnosis changed from RRMS to PPMS and if so why? I ask because I am wondering if I may have PPMS as opposed to RRMS and am not sure how to deal with this nagging worry. I am an early diagnosed MS sufferer and am about to embark on DMT therapy which will do nothing if I do have PPMS. Can anyone share experience with me?
Hi Wibbly Wobbly and welcome to the board!
Yes it does happen sometimes. It’s sometimes difficult for them to work out which type it is…but if the DMDs (is this what you meant? Disease Modifying Drugs?) don’t work, that will be a sign it’s PPMS. If you have had periods when your symptoms have significantly improved then it’s RRMS. With PPMS symptoms can vary a bit but there are no remissions.
Lots of people think that PPMS is the worst type of MS but that is not necessarily true. Aggressive RRMS can actually be much worse. Lots of us with PPMS find the progression to be slow.
Wait and see how it goes. I know that’s hard but it often takes time to find out exactly what type you have. In the meantime, I hope you find useful info on here.
It does take time to be certain about which type you have, but trying DMD’S will be a good indicator, as they do diddly squat for ppms.
Welcome to the forum, its such a help to talk to people who understand.
Hi , I am in limbo and MS is on the cards. First 2 neuros ruled MS out but last week I saw an MS expert in London. He thinks MS is a strong possibility and said if it was he would recommend Lemtrada for me.
He must therefore think RRMS. Now I have had attacks which I have got better from but I have also noticed that my spasticity without evidence of attacks.
Before christmas I was numb down the right side which has resolved and I also felt more tired than usual. This he said was an attack and as I had an enhanced lesion 2 years ago that also means RRMS.
I dont really have enough markers for an MS Dx but he said that it would be more likely to have an uncommon presentation of something common than a very uncommon disease !
Hi Monya, I looked at Lemtrada but as good as it is it does have more risk and side effects. If the MS is bad then that is the best DMT drug out there in my opinion. I decided to go for Tesfidera which is one category down from Lentrada but has less side effects or requires less long term monitoring. Look it up on this site and talk to your MS nurse about it. Worth considering. I wish you well. Please let me know how you get on either way by sending me a PM.
Hi Trev and welcome. I’ve been diagnosed with PPMS but looking back I think it’s possible I have SPMS. For years I’ve had episodes that have probably been relapses but nobody (myself included) ever considered them to be significant and I’ve spent many years berating myself for being pathetic and a bit of a hypochondriac. I don’t think I’m alone in this either.
I was upset initially when they dx PPMS as it has no treatment but once the shock wore off I’m just glad I have answers and I’m not just lazy. I know all drugs have side effects but if your Neuro thinks you may benefit from them it may be worth trying. It’s your decision but don’t you think that if you pass this up you’ll spend years kicking yourself or wondering if you made the right choice? These doctors specialise in neurological disorders and very few give any drugs without weighing up the benefits.
Talk to your Neuro and nurse about your concerns and they’ll probably explain why they’ve offered you this treatment. No two of us on this forum have all the same symptoms or rate of progression even though most of us have the same dx. Although we can try to offer you support both now and later, we all have had different experiences and only you can decide what you do. Keep us posted and good luck making this decision.
Min, thank you for your reply and indeed the others too. I have decided to go for a DMT drug called Tecfidera. They seem satisfied for now I have RRMS so it would be foolish not to try one of them. This one seems the best in terms of results versus risks.
Thanks again for your kind concern and advice.
I so get this!
I was a migraine sufferer growing up and I was pretty weak & feeble. It wasn’t til I got fit that the symptoms really started to show - I could dead-lift my bodyweight, yet sometimes I couldn’t make my right foot leave the floor.
It wasn’t til I go involved in the clinical trial that gastroenterology dept. decided that MS could’ve been responsible for symptoms, that they just couldn’t pin down.
and hi & welcome Trev
Hello Wibbly Wobbly (great name by the way) and hello everyone else.
This is my first ever post on this forum. My partner has been recently diagnosed with PPMS last week from RRMS last year.
Well, having said that, we are unsure whether that is an actual diagnosis or just his opinion as we were dispatched with no medication or referral or information for anywhere else with a parting shot of ‘I’ll see you in a year’!! This sounds bad, he was actually very good, very thorough but I don’t think there’s much concept of the isolating roller coaster they leave you with!!
So, my partner is nearly 50 (say it quietly) and when he thinks back, has had fairly mild symptoms for probably over ten years e.g pins and needles, dead muscles, face drop, foot drop, visual disturbances but has put it down to other things and generally ignored it. Then last year we had several recurring episodes which were more severe, the worst being where he could barely walk at all for 3 days. This prompted a GP visit, subsequent MRI scan and a diagnosis of MS in June. We then waited 4 months to see an MS nurse to then be referred last week to see another consultant who could prescribe.
Needless to say it was a bit of a shock last week after 7 months waiting for meds to find out he didn’t believe it was RRMS so didn’t offer drugs. It felt very much as though “there was nothing that could be done”.
My reading/research is telling me different though, and I’m emerging more positive than the last few days.
My partners mum died of progressive MS when he was 14. He is terrified the same is going to happen to him. We just have to hope that it’s been slow to progress so far and so won’t speed up. The worry is, according to his MRI scan, he should be worse than he is.
It seems some people have lots of lesions and aren’t too disabled and some have few lesions but lots of health problems.
Anyway, we are confused, concerned, scared etc etc and don’t wannt join your gang but looks like were gonna have to!!!
All the best everyone
Thanks Sonia. My mum tells me I always walked oddly as a child and more recently pre MS diagnosis people would ask if I had a limp. Also as a child I stopped eating and lost a lot of weight. They put it down to Coeliac so stuck me on a diet until I was 16 until they did a new procedure biopsy proving I wasn’t a Coeliac. Maybe I had signs of it back then? Both disorders are Kline system based so you never know. Thanks for you welcome.
Hi, worrying time for you. I wish you and you husband all the best. This forum is fantastic. I haven’t been diagnosed all that long ago but have relied on the good people here for their sound experience based advice.
Hi Singer and welcome. It’s definitely a group nobody wants or expects to join but has been a huge help to me. I was dx nearly 3 years ago and it was a massive shock as I was a nurse and immediately pictured all of the patients I’d nursed who had progressive ms and were very disabled.
The truth is that everyone progresses at different rates. I’m still (usually) quite mobile with a stick though I have says or even weeks when even standing is extremely painful. I’ve met a 70 year old woman newly dx who only got tested because of dizzy spells and was considering getting a stick just for balance when they hit. On the other hand some get affected badly quickly.
If your partner is up to it, it might help him to visit the forum. As you may have noticed we don’t just sit and cry about what is happening, we talk about all sorts of things. The people here have the illness and we all have different symptoms and ways of coping with them that you’ll find in no text book. If not, (or even if he does join) you’re more than welcome to visit, and well done for your first post, that’s often very difficult.
Welcome to our gang of lovely friendly people, always willing to listen whether you have questions, or just need to vent, there is usually someone on the forum.