New Diagnosis - I have a question, please.
Hi Everybody! - After 2 years of weird & wonderful symptoms, I now have a diagnosis of MS. It's a such a relief, but also doesn't answer many questions, as everybody with MS experiences different symptoms. Also, I was so taken aback by the consultants matter-of-fact approach, paired with my own visage of preparing for a fight, that every point or question I intended to ask just simply shrank away!
I've been given a choice of Tecfidera or Tsyabri for treatment. (I'm thinking Tecfidera).
My question is 'Does everyone with RRMS go on to eventually end up with progressive MS after many years, or is there a chance that you can stay with RRMS, and that maybe the relapses worsen over time?' I thought that RRMS, and Progressive MS were two different diagnoses. (I know they are, but does RRMS eventually become progressive in the end??) I am 44.
I know you good people will know the answer. Many thanks.
Alison x
I've been given a choice of Tecfidera or Tsyabri for treatment. (I'm thinking Tecfidera).
My question is 'Does everyone with RRMS go on to eventually end up with progressive MS after many years, or is there a chance that you can stay with RRMS, and that maybe the relapses worsen over time?' I thought that RRMS, and Progressive MS were two different diagnoses. (I know they are, but does RRMS eventually become progressive in the end??) I am 44.
I know you good people will know the answer. Many thanks.
Alison x
The one response you can be certain of hearing repeatedly is 'we just don't know'. Which is crap.
MS is a funky little bugger, in that it can completely mess one person up, whilst the next guy would be pretty much unscathed.
The symptoms vary; the effectiveness of drug therapy vary; the progressions vary; the rates of relapse vary; everything....... varies.
Does RRMS become SPMS.... i think the answer is 'usually' but NOT always. It depends on the frequency and severity of your relapses (i.e. when they start to overlap).
Moving off the uncertainty of the illness and onto the findings of clincal trials of drugs provided to modify the 'possible' course of the disease, may allow you to find some concrete facts. (They made me feel better anyway... until i researched how the drugs actually worked, to which the response across the board was more or less " we dunno!")
I learned that Tysabri comes with its own list of potential problems and inconveniences. I suspect you found the same, hence your leaning towards Tecfidera. I am a consumer of Tec and so far so good. However, other options remain out there.
Good luck to you on this little adventure. You will soon find a system that works for you and you'll care less about the unanswerable questions.
Seeing as you are the type of person who would describe the last two years as having 'weird and wonderful symptoms', i am confident that you will be just fine!
Well, I am not too certain about the answer to your question. I think I've read somewhere that a percentage goes from RRMS to SPMS but not sure what that is. Someone else may know.
What I do know is we are all unique with the weird and wonderful crazy symptoms. I think I described it as that and it was a relief for my diagnosis after such a long wait, so I know where you are coming from. I'm glad you have finally been given the answers you needed.
Unfortunately, you aren't the only one that has described their neuro as matter of fact. Sad really. That really does need to change, because even though they may see or diagnose people everyday, every person is different at the point of dx. I hope you have been appointed an MS nurse. Hopefully you keep a diary of the funny symptoms and definitely new symptoms to have them documented.
Up in "Everyday Living" posts there has been a lot of posts recently about Tecfidera and Tysabri. So you will see many chatting about their experiences with these DMDs.
Take care and look forward to chatting some more.
I'm sorry to hear about your diagnosis, but do understand what you mean about the relief - I vividly remember (and will always remember) being where you are just over four years ago, and I was almost elated for the first couple of weeks, because if I wasn't physically ill with anything, it was starting to look as if my problems must be psychiatric in nature, which was not really much comfort!
I think most people with RRMS do eventually go on to Secondary Progressive (SPMS), but it's not inevitable. I think the conversion rate is something like 80%, and the timescale typically more than ten years, but I haven't bothered to double-check my figures, so do bear in mind my memory is not what it was!
What may be confusing you is that (unless they were misdiagnosed) somebody can NEVER move from RRMS to primary progressive, or vice versa. Those two are mutually exclusive: if you have primary progressive, you have it right from the start, and will always have it. It's not something you develop after many years of RRMS, and it can't change into any of the other types either.
Typically - but again, no guarantees - relapses are most frequent in the early years, and lessen over time - not increase. In other words, it gradually changes from an episodic nature to a continual, but less bumpy, decline. Not surprisingly, most people are diagnosed when relapse activity is, or has recently been, quite high - as something must have happened to spark the investigations! Over time, there tends to be a decline in relapses, but conversely, an accumulation of disability.
None of this is set in stone, and the boundary between RRMS and Secondary Progressive is not that black and white. In theory, a diagnosis of Secondary Progressive would mean someone did not have relapses any more, but as the MS does not know it's been "redesignated", it doesn't know it is not meant to chuck in the odd relapse. So it's not unheard of for someone who was thought to be Secondary Progressive still to have some, but less frequent, relapses. It's more of a continuum, not a switch, if that makes sense?
Tina
x
I shall be seeing an MS nurse shortly, but it seems that the local MS team has about 2,000 people on their books, so I shall be patient and wait my turn. The hardest bit is over, and now I move forward.
Thank you all once again. I shall take every word on board!
Alison xx
I also recall hearing that relapses reduce over time, being more severe / frequent initially. To me this is an interesting observation.
One might reasonable suggest that this is not a characteristic of the disease, but a positive turn of events due to the patient addressing those factors thought to be a tricker to relapses; reduction of stress, increase of exercise; enhancement of a 'healthier' diet and lifestyle etc, or perhaps the benefits of good drugs?
Am I the exception that proves the rule, or simply experiencing a documented trend of the disease, that tends to be independent of lifestyle choices?
I'm not being smug or complacent, by the way - in case it sounds that way. I recognize that I could still have a relapse - and a big one - at any time. So I don't believe for one moment that I'm "cured", or that MS has just "gone away". Nevertheless, with hindsight, I feel peak relapse activity was probably before MS was even on the radar as a possibility. Because the symptoms were highly variable, I found them easy to dismiss as mystery viruses, or even injuries, without ever suspecting there was any sinister underlying cause.
I have never been diagnosed as secondary progressive, so officially speaking, I am still RRMS. But I feel I may have been diagnosed just as the tendency to relapse peaked, and then tapered off again. I don't attribute the change to anything I did, but I do feel there has been one, so it's probably the natural course the disease.
Tina
I started as RRMS in my late twenties, back then I really didn't have too much of a problem with my relapses & managed very well. I progressed to SPMS only about 8yrs ago & now I'm having to use a w/chair all the time, I'm unable to walk at all. So I had many fairly good years before reaching the stage I'm at now, about 35 years. If I had started DMD's earlier my progression might have been slower, who knows? I'd say to anyone to go with the DMD's as soon as possible, if recommended, to slow the progression of the disease.
Good luck with starting your drugs!
Rosina x
I dont have a DX of MS. But in 1990 I had radiation in my neck for cancer. At the time I suffered some damage to the spinal cord as I had about 6 months of l'hermittes. I was only 25 at the time and have had no problems until about 5 years ago when I am presenting with symptoms that look like progressive MS. An MRI has shown some thinning in the area of the radiation but as the brain scan and LP were both not indicative of MS then the DX is delayed radiation myelopathy.
Another neuro thinks I have had a CIS in 2007 ( I did have a dodgy episode) recovered and now there is detertioration under the CIS lesion
glad you finally have some answers but sorry that it's ms.
tysabri and tecfidera are manufactured by the same company and they are both supposed to ward off relapses by a substantial amount.
good luck with your choice
carole x
ps make a good friend of your gp because he/she can help with symptom management,
also find your nearest ms therapy centre because they offer a range of therapies including HBOT (Hyper Barric Oxygen Therapy)
which many msers swear by.
Regards
Robert
I shall try Tecfidera, and make sure it is monitored. If I have any doubts at all, I shall review the situation with my neurologist.
Fortunately, I live only 10 miles from a MS therapy centre, so I shall be heading their way a.s.a.p, and I shall be sussing out all the treatments, and help on hand.
It's becoming very clear to me that MS is like an impossible puzzle!
It's nice to know that not everybody is 'fast-tracked' through to SPMS!!!
Thank you all once again. :-)
Regards
Robert
It is possible for relapses to last as little as a week, but at least five or six weeks is the norm, and up to a year is not unusual.
So sadly, for most people, it's not a week and then you're fine. And again, for most people, there is some damage resulting from the relapse, so even though you recover, everything does not go back completely to normal - you are a little worse than before. Full recovery is possible, especially from early relapses, but gets less common as the disease wears on, so each time, you return to a slightly lower baseline.
Relapses can vary hugely in both duration and the form they take. They might not affect walking, but vision for example.
A majority of people with RRMS suffer fatigue even between relapses, too. Unfortunately, remission doesn't mean: "fine", it just means: "better than you were".
Tina
Alison x
Oxygen and the Brain. A Journey of Our Lifetime is written by Emeritus Professor of Medicine,Philip James, University of Dundee, pub. Best Publishing Company, Florida, USA. 500 pages and costs about £35. Unfortunately the postage is very high but I am glad I got it. There are a lot references to it and the author on Google. I understand that the author is working on serialising the book in the British Press-Daily Telegraph, in the New Year. I hope it will be be republished in the UK when it should be cheaper. I think I am right in saying it has been written for the lay-person to read. There is of course a lot of medical terminology but you gradually get the hang of it and I have no medical science, only a degree in history.
Regards
Rob
Alison
Regards
Rob
http://www.nhs.uk/Conditions/Multiple-Sclerosis/Pages/Introduction.aspx
Alison