Firstly, the society needs congratulating on 60 years. ''Tis no mean feat to be involved with ‘life’ and its cruelties. So, why have I joined this group? It’s a bit complicated, but I am a musician, 60 years old with PPMS. It seems you’ve got to use the initials as people reading this will know what it means. Don’t take this the wrong way when I tell you I only get out to play in pubs, once a month. I do get out for other things, but nothing as enjoyable; to play guitar, mandolins or whatever and have people singing along enjoying them selves…that and a few drinks no doubt. Today I have been writing a set list for the next outing. Quick Plug. It’s at The Crown in Humshaugh on Boxing Day. Anyway, I wanted to bring new tunes to the collection. One in particular is called “How Come” by Ronnie Lane. The man used to be the bassist for The Faces, or, as they later were called Rod Stewart and the Faces. But Ronnie left the band to do other things scoring a hit with 'How Come" with his band Slim Chance in 1973. It’s a buskers song, which has been played to death by street artist since. Why is all this relevant? I hear you asking. Just a few years later, Ronnie had MS. He had friends like Jimmy Page, Rod Stewart and the like that paid for his treatment. He regretfully died aged 51 in 1997.
I was diagnosed two and half years ago with PPMS. I was employable, I could drive, i could take my dog for a walk, I had three professions I am fully qualified in. Today, my moment comes when playing once a month. I am probably not alone, there are no doubt some who read this and think that fits me. Ronnie sang ‘How Come?’ I will sing this as well on Boxing Day, in my wheelchair thinking about him, how complication caused by the MS killed him. Sobering thought. So, now about my MS. It’s monthly treatment time again ‘Hooray’ I hear you shout…or ,…are you,…like me…thinking it’s a waste of time? I need some stats that show these monthly drug infusions have had some success. I for one am deteriorating continuously with unrelenting speed. Like a hand bag snatch. Someone needs to talk bottom line expectations. I need to know that if I continue at this rate, what do I need to prepare for. Someone…anyone please. Off to sing the Blues now…
As far as I understand there aren’t many of us with ppms who are offered treatment. If you read a lot of the literature, it’s common belief that the drugs aren’t effective in ppms. Saying that, we’re all different and our symptoms and the speed they worsen vary a lot despite our common diagnosis. Your condition appears to be worsening quite rapidly if your topic is accurate and you feel you’ve aged so rapidly, so you may get benefit from the treatment.
I think the only people who should decide whether to continue with the meds are you and your neurologist. Most of us are only medicated for symptom control but your Neuro won’t have prescribed the treatment you’re having without reason. Maybe you need to sit down with him/her, tell them about your concerns, side effects etc and then make an informed decision.
Please don’t think I’m being insensitive, I’ve read what I’ve written and don’t know any other way to explain that a fair number of us won’t be able to give you the answers you seek as we’ve never been faced with what decision. Please let us know how you get on.
Thankyou John and Min for your prompt replies. In response to what you say John, your philosophy is how I used to be before this foolish business started. I put too much hope in what the professionals say. 'Tis my fault for thinking they had the answers. Min, what you have said is in no way insensitive. You tell it like it is and thats a good thing. Tomorrow is treatment day. And, (shouldnt begin a sentence with ‘and’). Anyway, i have already decided that it will be the last time. As for talking to my neurologist, i am being kept at arms length despite requesting at least a phone call to talk a few issues through. I see him next year. October 31st. I last saw him In July. We are so fortunate to have the NHS despite its mismanagement through our governments. I should count my blessings… Enjoy the holidays and a Happy New Year to you. Tom
I am currently diagnosed with RRMS but my general trajectory is downwards - too much underlying relapse and sod all remission. I seriously think that I am now SPMS but my consultant is firmly of the opinion that I am not. This is not because she thinks I am necessarily wrong but because she “refuses to write me off” She is of the school of thought that the different flavours of MS are all on the same spectrum and DMDS help to reduce the chances of further damage.
I have Tysabri every 28 days with regular MRI.Before Tysabri I was having regular relapses with further lesions. Since Tysabri, no further lesions utility there has been a general decline in my mobility, speech, cognition etc. but on new symptoms. So, it’s not been a miracle but it has been a benefit.
welcome to the forum, hope you find it as useful as we all do.
I am surprised to hear you have been having treatment, as I was always led to believe there is no treatment for ppms, onlly symptom relief, but you must trust your neurologist.
i have had ppms for many years now, and whilst it has knackered my mobility, I use a powerchair and still try to do as much as I can, albeit difficult. Ms is a purely individual illness, and no one can predict how it will affect anyone, I have been lucky (?) in that mine has been a slow gradual decline, and whilst yours seems aggressive at the moment, you may plateau and slow down, fingers crossed that is the case.
Takee care and ha ve a lovely Christmas and a happy and healthy new year.
Tom do you have an ms nurse? Many of these are very good and will take more time to explain things. He/she will have access to your records and could possibly understand how your Neuro does things. The best thing I did was get my ms nurse’s e mail address as I hate phoning people as I know they’re so busy, but by writing to her she can read them when she has time and write back. She also books me in to see the Neuro if she thinks I need it.
There’s nothing worse than being left in the dark. Having an appointment in October is not good enough when you have questions now! Is there anyone you can discuss this with during your transfusion? I can’t imagine how difficult it must be to make decisions like this on your own.
I was told by my neuro there was no treatment for me with PPMS i finally got diagnosed after 10 years ago in february. It went from might be MS to PPMS…with all those years in between with NOTHING, no treatment nada zilch.
Like you i had a very good profession and went from working, walking the dog to now being wheelchaired out and about when i can get someone to take me. I can still walk yes, but the effort just tires me out too much now.
Anyway going back to what you said, perhaps it is the treatment you are having every month which is making you feel worse…
I take nothing, and live on a stead plateu, but then everyone is different.
Tom. I agree with all of the good advice above. I don’t have any treatment e cept physio and paid relief. I hope you find some answers. Please let us know how you get on. Will raise my glass to you on Boxing Day. What time is your gig? You may very well hear me joining in! Take good care. , Anne x
Hey Tom! Great to come across another Ronnie Lane fan. I’m sorry I can’t really add much to the discussion about treatment, but I could talk for hours about Ronnie, mandolins, singing in pubs etc. ‘How Come’ is one of my favourite s too, and I used to sing it a lot. Can’t play at all now because of my hands, so I’m selling off instruments gradually. This isn’t as painful as I thought it might be- I’d rather they were being played than just hanging on my wall. I’m making music with the computer now.
Anyway, hang on in there, treasure your memories of all the music you’ve played and the people you’ve played with, and keep playing!
Hi everyone. I am overwhelmed by the number of fellow sufferers of this disease, and the jolly, uptempo content of your comments. It’s been a couple of weeks since my last post, so I will now let you all know what is going on. Having ppms means there is no treatment that stops/slows down/interrupts the progressive nature of the disease. Now, before I was given my last treatment of Tysabri, I wanted to get ‘stuff’ off my chest by speaking to a specialist MS nurse. So, after a short wait, I met the nurse and told her about how my mobility, balance, coordination etc was getting worse every month despite having the Tysabri. This little nugget of information she gave, set me back somewhat. And I am more or less quoting, “There are two parts to the disease, spasticity (mobility etc) and inflammatory. Two parts, not just the progressive side, but inflammatory as well. The treatment stops/slows down the disease in the brain. Please look at the excellent picture that shows what the disease does and what the treatment is being used for.” Two parts-I never knew that. No one told me this in the past otherwise I would not be going through the mental anguish as well as the disease. I am not sure if I can post the picture on this forum, however, it’s the double whammy that we are suffering with. Then the penny dropped, multiple sclerosis = many scars. I had my treatment, spent three days in bed, up and about for a few days then another blow with a U.T.I. Peeing razor blades for five days with no relief from antibiotics sent me into delirium. And therefore I spent Christmas Day and Boxing Day in hospital. Well, there you have it. “Two Parts” to MS. No turkey or pudding and no performing. Let’s all hope and pray that the new treatment currently under scrutiny by NICE gets its licence by next October and who knows? Unable to put the picture on here sorry. Anyone any ideas? Tom
There are photo hosting sites you an use and then you get a link to put in your post. I don’t use any now as between facebook & twitter, I think I’ve got enough!
Anyway, I meant to say a UTI can impact most illnesses, My MS nurse even referred to UTI’s being like a pseudo relapse.
So sorry to hear you were in hospital tho, rotten at Christmas Hope you’re feeling better soon
Well, it’s treatment time again folks. However, the treatment has a rough effect on me for a few days. I have been told that it is doing its stuff as I have no obvious new lesions. However, my mobility, stability etc is getting worse. I have probably mentioned this in a previous post, but when I have the treatment I lose 10% of the year in recovery. Anyone know if there are studies on those who stopped having the treatment (Tysabri) and worsening symptoms compared with keeping having it. It’s niggling me that I lose 36+ days a year recovering…is the treatment worth it? mmmmmm anyone?
I am newly diagnosed & in Canada. My Neurologist tells me there is nothing available that stops PPMS but Roche might have Ocrelizumab approved by the end of March.
Supposedly Ocrelizumab has a 50% success ratio whatever that means - I will see my Neurologist in early March so we will chat - hopefully I can figure out what is going on.
Welcome to the forum Gaz, maybe a good idea to start a new post, just click on the ‘new thread’ above and start, tell us about yourself, any questions you may have, or need a rant, there are plenty of lovely people here, always willing to offer advice when they can, or listen to you.
Yeh, Carol, ‘she’ does take all the time. I would like to think of ms as an ‘it’. Not animal, vegetables or mineral. Just an ‘it’. Because that is all ‘it’ deserves. Time to play the blues…