In not diagnosed yet but going that way too quickly for my kikin
i wondered has anyone with ppms had their symptoms go away even the milder ones?
ive had a build of symptoms over 4 months that range from mild to bad, but some have gone away?
Lhermittes that I had has pretty much gone from a 10 to a 1 so barely noticeable, same with a toe and finger that was numb for about a week, also a sudden onset burning in both feet that has now gone back to barely there?
does this sound like progressive?
Hi Kris, yes with PPMS symptoms come and go all the time. Actually I find that no two days are the same. Never without symptoms, but they vary by the day, the month, the year.
But there are numerous other conditions that are the same… so doesn’t mean you have PPMS.
Pat xx
I was hoping it would be RRMS because it remits but I read a lot of people say theirs come and go?
Nevermknd, it’s the speed that this has come on that worries me so far, does ppms ever slow down or is it same speed increase from the start?
The speed of progression isn’t consistent. It can slow down or even stop.
I have found my progression speed up when I’ve been stressed out or been overdoing it. I try to live very quietly and stress-free which seem to keep the progression slower… although I realise that’s not possible for everyone.
But basically no, because the speed has been fast up to now does not mean it will continue to be.
Pat xx
Hi Pat
thabkyiu I appreicate you taking time to answer me
i think that’s my biggest concern that it’s so fast so far and so widespread it doesn’t look like ppms or RRMS more like an aggressive type but again you never know I guess
Kris even if it’s aggressive it would still fit into one of the types… either PPMS, RRMS, SPMS (which starts as RRMS) or PRMS which is progressive with relapses.
Let’s hope IF it is MS it’s RRMS because there are good drugs for that.
Try to take it one day at a time. Hopefully you’ll know what it is before long.
Pat xx
Hi from what I gather the sensory stuff comes and goes - like l’hermittes. Mine was really bad in 2008, not much since. Motor issues like drop-foot come and go in RRMS but in progressive types once they are there they are here to stay. In RRMS you could wake up with foot drop and it could be away by the evening. In progressive MS you dont just wake up one day with foot drop. It starts so slowly and gets worse. I noticed foot drop after a long walk which recovered after a rest. Then over a year foot drop appeared sooner and sooner into the walk. GPs fiddled with my foot for a long time insisting I didnt have foot drop. The foot drop is permanent now I am afraid and there to stay.
I don’t have any pain in my legs at all except a bit of tightness in my right calf muscle which has spasticity.
As I said before I dont have a dx yet and you wont get one either unless you satisfy the McDonald criteria for an MS diagnosis.
Moyna xxx
Hi moyna
im suprided you don’t qualify for diagnosis based on what’s happened and continued progression?
i have spasticity and pain in both legs every day for the past two weeks that started suddenly but comes and goes throughout the day. Some days it hurts to walk 200mrteres other days I can walk miles but ache the day later and I’m only 30
it isn’t right how quick this has gone so far and I feel IVE had the shit end with all this at this age
sorry feeling a bit crap tody
Kris,lf you are thinking of trying LDN - to help with your MS symptoms - l know you need a letter from your GP stating that you have MS. But - LDN - is also used for other illnesses. As you are undergoing tests - surely, there must be something that the GP can put on the letter that will enable you get it. Or even better - considering all your symptoms and the fact that the GP has nothing else to offer you - perhaps your GP could give you a nhs prescription for LDN. Many do - and its very cheap.
But l do feel that LDN - will put you mentally in a better place.
lts worth googling LDN for autoimmune diseases and cancer. Look at the lslandHealth site. lt is used successfully for lBS/Crohns/Coeliac/ and many cancers along with Vitd3.
Your GP - must be looking at lnflammation of the Spinal Cord - which is what l was told l had before a MRI/LP confirmed MS.
I started with PPMS in my mid twenties. The beginning was almost violent, put I had relative stability with only slow progression for well over a decade after that. I had Lhermittes for a couple of years in the very beginning - that’s gone completely now. And I have had temporary symptoms that have come and gone, e.g. speech slurring. PPMS just isn’t predictable at all, it varies for every person. Sometimes progression goes through a bad phase, then a plateau can be reached. I recommend this publication from the MS Trust for more information on PPMS (you can download it or order a hard copy):
Hi lapwing
what was it like at the start? I’m concerned at how violent it’s been for me at the atart
I started with numb feet, then spasms down my right side, Lhermittes, difficulty walking… Then it calmed after some months, 4 years later I still got up and down Ben Lomond with no walking aid, I was still cycling and carrying my bike on my shoulder up stairs 10 years later. After the initial onslaught, there was a long calm period for me. There’s just no telling. In the past couple of years I’ve had temporary symptoms on top of the slow progression - what I imagine as some nasty goblins in my system, who mess around with my wiring just for fun every now and again. And wouldn’t I like to get them out and give them a good thrashing. But generally, things have returned to near normal each time they’ve had a party. And who knows, with biotin / MD1003 or something else, maybe we have a weapon on the way to see them off.
Speaking personally - this may not ring true for everyone - the first thing was for me to accept that I have a nasty disease. And then I could start giving myself credit for fighting it. Every step of the way.
I wish you all the best and lots of strength. It’s not easy, I know.
Hi Spacejacket, not sure I understood your meaning… but just to say that inflammation of spinal cord or lesions on spinal cord are not present in everyone with PPMS. I have only brain lesions & positive LP and a diagnosis of PPMS.
Pat xx
Hi lapwing
thankyou for answering and letting me know
mine has started with lhermittes hand tingling foot tingling then odd arms and tight legs making it hard to walk, I hope this follows your pattern and starts to go away or at least stops for awhile so I can enjoy my family and be a good dad, it’s a kicker as I’m only 30 but keep reading how it’s worse for blokes and stories of people in chairs within two years etc and the speed of this has scared me
the Lhermittes and foot thing has settled a lot in honesty, it’s just the legs and arms that worry me bow
What were your spasms like and how did it affect your walking?
That’s odd I dont know if I have any brain lesions yet but I guess I’ll find out soon had another mri yesterday of brain and cervical spone
wanted full spine as I have leg issues and pain in my spine itself when you press it or if i lean forward or back? In a very precise spot, has anyone else had this?
Kris, you may well have a just a disc pressing on your spine which could be easily fixed. Especially if there is pain in a particular spot.
Moyna xxx
It would explain the lower limb issues but not the lhermittes and tingling
its literally in the middle of my back if I over extend either way it causes pain at that exact spot, same if I press on the actual spine itself, I felt a twinge there months ago and said to my partner, if you can feel lesions then that’s where one is!
not sure that’s possible, there’s also not enough widespread pain around it to suggest disc I think? I would love it to be the case
The unpredictable spasms down one side were scary and very embarrassing. This was when I was starting my MSc course and meeting lots of new people… I would just sort of double up all of a sudden. But they faded away. I’ve had them again recently on the left side this time, but again, they seem to have gone again. My “theory” is that my brain is sending out test signals!
My walking was really sluggish for a while in the beginning, before things improved slightly and stabilised. I know - it’s frightening. I tend to listen to Sibelius loudly when the fears creep in - that blasts them away and revives my fighting spirit! As well as challenging myself with things that are not so easy for me any more, I do like to do things that my symptoms do not affect as much, to allow me to forget for a while that I have MS.
You can hear lots of generalisations about MS, but the truth is that it’s not possible to know. Don’t lose heart, keep fighting. You’re not alone, and there is so much research going on into progressive MS these days.
Hi Kris,
I sent you a message, if you get a chance to check it out.