Hi folks probably the million pound question but how do you tell if its a relapse or the end of 1 , when i went blind in Jan 2013 i assume this is a relapse as i felt dredful to but even though ive been ill for 14yrs 2013 until today i have felt awful nearly everyday and ive read loads but just wondered if someof the long term folks have any guidance in this matter thanks in advance
respect sheep
Hi Sheep,
I have not had very many (although I consider I may have a very mild one at the moment - as it so far consists only of a slightly numb foot, worse in the bath, I’m not moaning).
However, of the ones I’ve had, I will say they did not have a definite end date. Symptoms very slowly resolved, over a long time (months), to the point I’d almost forgotten about them, until I was struck by the sudden thought they didn’t seem to be around any more - but they might have slyly disappeared before that - it was just so very gradual, I didn’t notice until I really stopped to think about it.
I don’t want to mislead you, because not ALL symptoms got better. In general, even between relapses, I feel much rougher than before all this started. I have more or less permanent pain - in my feet especially - and I’m knackered all the time. I even wake up knackered, before I’ve done anything. But to me, this is not relapse, this is “How I am now”. I have a new health baseline, which is not as good as it was before, but very pronounced and dramatic symptoms - like not being able to feel my feet at all - did eventually resolve.
I don’t know if I’ve helped or confused. Maybe I should have just typed: “I dunno”?
Tina
Sorry to jump in here but may I ask Tina is she has been told what type of ms she has and if she’s takung dmds. Sounds very similar to me. They queried pp or sp for me. The ms hug I had did go after 4 months but my other symptoms have stayed with me. Other symptoms come and fade over time but I always have pain in hands, and arms, feet. Dodgy bladder, dodgy eyesight, dodgy speech and memory and thought processes are incredibly slow. Sorry Sheep, I can’t offer any words of wisdom but I hope you get a break from your symptoms. Lynn x
Hi Tina many many thanks its helped as you know my sight went Jan 2013 but ive been in pain legs arms back neck chest and joints for the full 14yrs but this year last few months at night im getting very painful cramps down 1 side of my neck and in the arch of both feet , not everynight but at least once a week , gonna mention that along with a list to my MS Nurse on the 6th , i seem to get 1 or 1 & 1/2 months every now and again where i feel completely normal whatever normal is ( i dont think anyone has ever classed me as normal ha ha ha ha) but i guess im just trying to build a picture of what may have been in the past MS related etc or just normal old age syndrome aches and pains , i guess part of me is trying to discover a pattern for myself and perhaps this is just wishful thinking on my behalf , i was hoping to ask at the support group but they havent bothered at all with any contact so im guessing im on me own but thankyou as i hold your comments and thoughts very highly Anitra as you talk in my language as for a newcomer alot of the terms and all the reading is almost mind blowing thankyou x
no probs lynn ask away x
respect sheep x
Hi Lynn, Definitely RRMS, but no, I’m not taking DMDs (my choice, but completely with neuro’s blessing - I was only a borderline qualifier to begin with - if one of my relapses had delayed for just a fortnight, they’d have been off the agenda altogether). I’ve no reason to suspect my RRMS diagnosis is incorrect or in doubt. In retrospect, I’d had several clear relapses before diagnosis, from which I’d recovered completely, or almost completely, without suspecting anything sinister. I’d always convinced myself they were some bug or injury. PPMS has never been in question, as I have not had continuous deterioration from the start. From what I can gather, it is quite common or even the norm not to recover completely from relapses after the early ones. That by itself does not mean PPMS should be suspected. Even RRMS, despite the name, is still a progressive disease. Remission doesn’t always mean feeling fine, but just better than you were. As it’s my belief I may have had MS for many years before diagnosis, I do think there’s a possibility it could have been beginning to turn to secondary, even as I was diagnosed, and would not be at all surprised to be told it was now secondary, as I’ve already suspected. But PPMS? No, quite confident I don’t have and have never had that. Too clearly relapsing and remitting from the start - even though I was oblivious what the relapses were at the time, and only worked it out with hindsight. In a way it’s good to know what those strange “episodes” must have been. I used to think I was a very unlucky person to keep injuring myself for no apparent reason, or picking up mystery bugs nobody else seemed to get. It’s obvious now they must have been relapses, but I didn’t know of any disease that behaved like that. I did sometimes go to the doctor about some of the things, but she didn’t spot any connection either. Tina x
Hi Anitra
Can i ask who tells you which type it is as im in on 6th to see my nurse will she be able to
tell me as my neuro is useless i haven’t heard from him in 12 + months as the last guy i saw
was a trainee neuro as i haven’t a clue which 1 im supposed to have would 14yrs point at
RRMS
respect sheep
Hi again, Gray,
Mine said in black and white (and bold and underlined! ) in the letter my neuro sent to my GP following diagnosis - copy to me.
I’m pretty sure he did tell me indirectly in the consultation itself, as he drew me a little sawtooth diagram, illustrating relapse and remission. However he did not expressly tell me there were other types it was possible to have - I suppose at the risk of confusing me, as there doesn’t seem much point telling a patient about varieties they haven’t got.
I think, though, by that point, I’d already been on these forums a number of months as a “Limbolander”, so I was well aware there were different types. I was also aware that if you’d had episodes from which you’d recovered significantly or completely, it was almost certainly RRMS.
So, strange as it may seem, I don’t really remember pondering that it might not be. I’d always assumed, from the episodic nature, that if it was MS at all, it must be RRMS - so I wasn’t at all surprised by that diagnosis.
It isn’t rocket science, in the majority of cases: you’ve either got continuously worse from the start, OR you’ve had noticeable “episodes” (relapses) when you were worse. A very small percentage of patients present a more complex picture, because they’ve gone continuously downhill from the start AND had relapses superimposed on it. This is called Progressive Relapsing MS. It’s the rarest of all types, and I think has only recently been recognised as a diagnosis in its own right, accounting for about 5% of patients, compared to 85% for RRMS.
If there’s any doubt, first and easiest port of call would probably be your GP, as they should certainly have it on record, even if nobody got round to telling you.
I don’t think length of time you’ve been ill is a reliable indicator, as PPMS isn’t always faster or more disabling than RRMS. You can have relatively slow and stable PPMS, just as you can have aggressively disabling RRMS. Like so many things with MS, it seems largely a matter of luck. The key differentiator is just whether deterioration has been continual, or episodic. It is normal for some disability to accrue after repeated relapses, so imperfect recovery does not, by itself, mean it can’t be RRMS.
Hope this helps, and hope you’re doing as well as may be today!
Tina
Hi This is a question that my doctor asked she queried ppms but neuro said it is definitely rrms. I had a huge relapse in June where I couldn’t write had drop foot weak arm etc. However I’ve never went back to baseline I can now use my arm I couldn’t even lift the kettle. Didn’t know how to use fork knife rtc. Couldn’t drive walk my left arm was completely numb but did come back completely I think I missed a relapse sept/ October as Iwas pretending it wasn’t happenin My nov relapse when I got diagnosed my eye muscle wouldn’t work my face dropped. My eye returned although can get a little sore. My mouth feels weird If I talk loads but it’s improved from what it was Then Santa brought me my left side reduced sensation etc. So I worried it was progressive but It appears to he highly active rrms rather than progressive. After my first batch of steroids the pain started and has never left I’m hoping for more answers after my spine / brain MRI next week with dye Don’t know if want I’ve said makes any sense. Em x