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is it ppms?

hi,

I was diagnosed about 2 years ago at the age of 45 although i have been under the neuro for 5 years after a big relapse, off work for 6 weeks and on steroids which helped.

Since then i have regular appointments with my ms nurse and yearly with my neuro, what im confused about is that although ive been told i have ms, i don’t know which type it is.

I have had possibly 2 sensory relapses in the last 2 years but nothing major. however my symptoms are continuing to get worse. im on baclofen for spasms at night. my legs feel like lead the whole time and walking is getting difficult.

Also stairs are fun as i now have drop foot and seem to fall up the stairs on a regular basis.

Now im wondering if its ppms as i was diagnosed at a later age, i havent been offered any dmd’s at all and i seem to be getting worse without any major relapses.

Would appreciate your thoughts as i am worrying about it

Thanks Elaine

Hi Elaine,

I was dx 7 years ago but I only found out I was dx SPMS last year. I assumed I was RRMS as no one told me otherwise. Nothing seemed to add up though. No offer of DMDs and seemed to get progressively worse. So last year at my yearly meeting I asked my ms nurse and it was all down on my notes. I was originally dx PPMS but I told my neuro about numbness on and off for about 20 years so then he dx me SPMS. If I was you ask to see your notes.

I really know how confused you are.

Mags xx

Thanks mags.

I have an appointment with the ms nurse in April so i think i will speak to her then, i know it wont make any difference knowing but i am getting quite stressed at not knowing. I think its the control freak in me lol.

Reading about the different types makes me think its ppms and especially as the majority of people on the forum seem to be on dmd’s and ive not been offered anything.

I really appreciate your reply, it makes me realise that im not the only one who is confused by all this. I will pluck up the courage to ask next month now.

Elaine

xx

Hi Elle,

In my opinion, you can’t have PPMS if it all began with “a big relapse” - there are no relapses with PPMS, and steroids wouldn’t have helped.

But I don’t understand why you can’t just ask your neuro or MS nurse (if you have one). It seems silly to just be worrying about it, and not ask the people who could give a definite answer.

Don’t worry about the rubbish online that says it’s going to be PPMS if you’re older. I was diagnosed at 44 with RRMS - very obvious, as I had a clear and very pronounced relapse, and with the benefit of hindsight, had had others before. So it was really not rocket science that I had the relapsing remitting form of the disease. I could even date the relapses - not to exact calendar dates, but by memorable landmarks, like: “That was about when I had my birthday, that was after my dad died”, that sort of thing.

I’m afraid something often overlooked is that RRMS is still a progressive disease. It doesn’t mean being fine when not relapsing - that’s not how it works. Well, maybe for a few lucky people, but not most of us.

Don’t you have a copy of your diagnosis letter? Mine says in black and white (bold, underlined): “Relapsing Remitting MS”

I don’t think your diagnosis is debatable if you’ve had clear relapses and are still having them - it certainly couldn’t be PPMS.

But it’s surprising you’ve had no DMD discussion. It may be that your relapses were not considered frequent or serious enough (the guideline is two clinically significant ones in any two-year window). If they weren’t that frequent, or very minor, you may not have qualified. But again, ask. I can’t tell why you might not have qualified, but your neuro will know.

I was borderline - two relapses in two years…just. But that was not typical - I think I only had just the once they were close enough together. I qualified for DMDs, but declined - with my neuro’s blessing. I was a very borderline qualifier in the first place. Another fortnight later for the second relapse and I’d have been out of the running anyway - it was that close.

Tina

x

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Hi Tina

Thanks for the reply,

i know your right, im worrying and not asking the right people, i have an appointment with my ms nurse in April, so i am going to ask her then.

I didn’t get a diagnosis letter, my neuro kept on suggesting ms but i did tell him that i didn’t want to be diagnosed with it. I was in denial and very stubborn.

However after 3 years i received a phone call from the ms nurse asking me to go in to see her, when i asked why she said i had recently been diagnosed with ms. The consultant had made the decision for me. I have accepted it now however ive not got to find out which type.

I think now ive accepted it more, i would be interested in dmd’s if possible but they havent been offered to me. Like you have said its a progressive disease whichever type it is.

Elaine

I know what you mean, Elaine.

I didn’t want to be diagnosed either - although there was money in it, as I had critical illness insurance, so it did turn out to be a slight silver lining.

I grew up believing anything that went away by itself couldn’t be anything very serious, because that’s what my parents had taught me: anything serious doesn’t clear up by itself - and by and large, they’re right! Of course, it wasn’t their fault they didn’t know about weird relapsing remitting diseases like MS - who does, until they get one of them?

So when I had my earliest “episodes” I was very reluctant to do anything about it, as I seemed to make a good recovery, so I reasoned: “How serious can it be?”

When I had the episode (relapse) that led to my diagnosis, the neuro wanted me to have further investigations (MRI, blood tests), but I was all for going home and leaving it, and came very close to doing just that!

In fact, I asked: “Well what happens if I don’t do that, and just go home?”

He said: “Well, it might never happen again. It might happen again and be the same, or happen again and be worse. If it happens again and is worse, we would really like to know what it is, so we know how to treat it, and don’t have to start from scratch with the investigations…”

So I very reluctantly realised he was right, and I had to go through with the investigations, despite my instinct to go home and try to pretend it never happened!

But it was a close thing - he’d even written on the note to my GP something like: “Note: this patient may elect not to pursue diagnosis”.

I’m still not always sure if I did the right thing. Obviously, the insurance money was a boon, especially as I’ve since been made redundant. But it made no difference in terms of treatment, as I declined DMDs anyway.

In one sense it was a relief to be diagnosed, as it explained a lot of small mysteries over the years. But the other side of the coin was I started noticing every symptom, and registering it as sinister, whereas previously I’d been easily able to ignore it, and kid myself it was just my age, or hormones, or something.

Suddenly, every twinge was a sign I was ill, and not just over 40!

But I suppose, however slow on the uptake I was - or reluctant to confront the obvious - there would have come a time when I had to admit I was ill. It wasn’t really a question of “If”, just “When”. I suppose I might have managed another few years telling myself it was nothing. But not many, really.

Tina

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Hi Elaine,

Your situation sounds similar to mine. I had an obvious attack in 2008. My GP thought it was a virus and I didnt see a neuro although he gave me steriods and I bounced back. A year later I noticed a fatiguable foot drop after a long walk but it went away after a 5 minute rest.

This got worse and worse and I saw a neuro in 2011. An MRI showed a lesion on my cervical spinal cord and it was reckoned this appeared with the attack in 2008. My LP was negative so I didnt have enough evidence for a MS DX. My foot drop has continued to get worse and further MRIs and LP have still not given me a definite dx.

On the Barts MS blog I saw something called Bout Onset Progressive MS. Basically it is when someone has an isolated attack the nerves have been exposed and over time will die off slowly. The person will get slowly worse. Normally they reach a plateau.

This might be what has happened to me - nerve damage under a single lesion. I have had no further attacks so DMDs would be of no use. However I had radiation treatment in the area 25 years ago and this could have caused the neurodegeration.

The attack I had in 2008 I believe started the foot drop ball rolling. I have been told it is not PPMS as there was an attack which respoded to steriods. Also SPMS is unlikely because usually people diagnosed with SPMS have MRIs which show many lesions which have appeared at different times (ie there must have been a RRMS phase).

My attack came after I had a vaccination. I often wonder if this caused a blip in my immune system causing a single attack. As my recent LPs have been clear the immune system is no longer in my CNS.

Take Care

Moyna xxx