New Diagnosis - I have a question, please.

New diagnosis and before diagnosis
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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

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As with absolutely everybody else, the questions come thick and fast. The answers however, do not.

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!

1 Like
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Hi Alison,

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

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Yes, very sorry - I said ‘progressive MS’ but I really meant ‘Secondary Progressive MS’. Well, I was sure somebody would have an answer of sorts. Thank you, Thank you, Thank you!

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

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Anitra - i think your stats are the same one i have read, with 80% of RR developing into SP.

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?

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So how would you explain patients like me, who have made no lifestyle changes whatsoever, but have still noticed what seems to be a decline in the number of marked episodes (AKA relapses) over the years?

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

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Hi Alison, I hope you’re feeling a little better after having your dx confirmed, maybe not better, but at least relieved that now you have a name to call it!

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

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Hello, my neuro told me that SPMS is when the nerves in the spine deteriorate under areas old lesions. As we age there is a natural aging process in our whole bodies and that damaged areas will deteriorate faster.

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

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hi sprout

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.

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Mmmmmm, The diagnosis and progression of MS is some way from being an exact science,but I think you need to put your trust in your own body and how you feel. I have had R&R MS for 25 years but only with a formal diagnosis around 13 years ago. It has been difficult to define any sort of relapse pattern but what has been clear is that recovery point relapseis never complete and their is a cumulative deterioration. My latest diagnosis is either I still have R&R without the remission or I have moved to SPMS, either way the effects are pretty much that same and after 25 years my base line position is so weak that I would find it almost impossible to actually distinguish if I was having a relapse unless it was impacting on something new such as double vision for example. All in all it can get very frustrating in having questions without being able to pin down any firm answers. At times it can feel like the Neurology bods are very focussed on trying ominimise relapses and mitigate against relapse symptoms, when you tip over the edge then it can feel like there is nothing more they can do to help which can be frustrating. An MS diagnosis is predicated on judgement and not definitive medical evidence, or that is what it has felt like to me!

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Well I have had it for 30 years since age 40. I walk slowly short distances using a stick. Some days better than others. I use a scooter for long-distance events and I drive using hand-controls. Got the new car and new scooter a week ago together with hoist in the boot so we do not have to haul the scooter out by hand any more. The walking difficulty has taken a long time to develop. I do simple leg-stretching exercises every day which has helped a lot. I also reckon the HBOT has helped a lot in slowing down the progression and I started that a couple of years after the discovery of MS. A lot of people with MS use it and a recent book has been published about it and other things on MS entitled “Oxygen and the Brain. A Journey of Our Lifetime”, published by Best Publishing Company. All about pressure and oxygen and blood flow and stuff. I still have a lot of other typical MS symptoms I would rather be without like fatigue, loss of energy, bowel and bladder function but a long slow development. I have not had any drug therapy but that is just a personal thing and I know people who have found something called campath to be very effective; although they have to have monthly blood tests. After such a long time with MS I think it is probably true to say that the majority of us live a normal life-span even with the disabling symptoms. So I hope that helps.

Regards

Robert

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Aw, Thanks so much you very good people! - I’ve made the treatment decision, and I am opting for Tecfidera. Solely, because the risks of getting PML, although unlikely, are simply too high. I’ve just become aware of one fatality from PML whilst taking Tecfidera, but when I read the details it seems that something was amiss right from the start. However, that is not to say that any fatality is acceptable, and my condolences go out to the deceased’s family.

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. :slight_smile:

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Living close to a centre makes it much easier. When you start HBOT you do 20 sessions as quickly as location and domestic arrangements will allow. After that most people do one a week. I began doing one every other day with a break at weekends. I still do one a week. I have discovered there are sound medical reasons why a high dosage of oxygen used as a treatment can be helpful. The centres are operated by a great bunch of people with a lot of experience of helping people with MS. You are right about MS being a puzzle but that book I referred to throws a lot of light on the whole history of MS.

Regards

Robert

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Mmm…plenty to think about! Thanks Rob for the name of that book, I shall have a look around for it.

Alison x

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Hi Alison

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

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Hi RobRob i sent you a pm but don’t know if you got it. I hadn’t heard of HBOT but i have googled it. Where do you get this doen and how often? Is it the same thing as divers use ike a big chamber?