which type of MS

Everyday living
1

Hi, just wondering, how do you know what type of MS you have? I have read on here once, (before I was diagnosed), a guy who sounded really fed up/angry about people with one type thinking they were worse off when he had the ‘worse’ type. I didn’t really understand it all then, don’t understand much more now as have only recently been diagnosed and haven’t yet been to MS clinic but I have my appointment through for next week. I went to pieces in the neurologists room and nothing more got talked about and I left. Went from being in limbo to knowing I have ms but still in limbo!

Andie

2

I think 80 percent start off rrms if you relapse its probably that x

3

Hi,

They cant tell which type of MS you have by scans of physical exams alone. They look at your history.

For example RRMS (the relaspsing remmitting type) usually starts with a one off attack such as optic neuritis. It resolves usually completely after a few weeks. It can also start with a patch of numbness which is ignored by the patient as a trapped nerve of someting. So basically they have attacks and then get some resolution. They can be lucky and have very few attacks.

After years of RRMS the person may notice that they are having fewer attacks but a steady progression of symptoms without attacks means the person is in SPMS. Secondary Progressive. Some people may go straight into SPMS as their phase of RRMS may have been quite benign.

In primary progressive MS (PPMS) . The person is usually in their 40s. There are no obvious attacks just the slow recognitio that something is just not right. These people usually notice the problems in their legs first.

There is really only treatment for RRMS in the form of DMDs. The other types there is only infortunately symptom relief.

I hope this helps. Most people have an idea were they fit in.

Take Care Moyna xxx

4

Hi, I am sure I read somewhere, but can’t find it again, that you can’t start off with primary progressive.I don’t understand it all as yet, but i just feel things have got progressively worse since this time last year.Its all weird. I can’t wait til I meet this wonderful MS nurse and doctor that I have been told about. Thank you Catmummy x

5

Sorry Moyna, only just seen your reply. So many abbreviations, lol. Feel I need to study to understand it all, lol. Going to read yours through again and look things up. Thank you x

6

People are going to hate me saying this but I think the division between relapsing-remitting MS and secondary progressive is a false one. For me, my bladder control has been terrible, then much better again, then worse again and better again, with each phase lasting months. So am I having relapses each time? My walking has got worse pretty steadily over fifteen years that I have had MS. I have had a couple of ‘relapses’ about seven years ago where it got worse and then got a bit better again but the rest of the time it’s just got worse and worse. So that makes me sound as if I’ve got some form of progressive MS, doesn’t it? None of the seven(!) neurologists I have seen has ever specified what type I have and I’ve never asked.

7

Hi, just to repeat what Moyna has said, yes peoople can and do start off with Primary Progressive MS. (PPMS)

PPMS is always PPMS. It does often begin with foot drop and mobility problems. There are no let ups, as in RRMS.

RRMS ansd SPMS dont become PPMS, but RRMS can become SPMS.

I know, confusing isnt it at first?

luv Pollx

8

its such a minefield.the not knowing drives you crazy. Ive just been looking up things and talking to others, friends of friends that have all been truly wonderful, haven’t met all of them as yet, but all offering me support for this club ive been catapulted in. I have been thinking oh il be ok, gt some sort of treatment sorted out and il be back to the gym doing what i was doing and all willl be well, and as much as i think i am getting my head around all this, reallly, I am not getting my head around it at all. I am scared stiff. Roll on Monday, i just hope i can keep it together when I see doc and nurse. Nerves get the better of me.I am in disbelief that all this is oging on in my body.If I could get to the top of a bloody big hill I would scream and scream… but i can’t :0(

9

Hello Sunnydaylover,

I can well understand how mixed up and frustrated you feel. I was really in shock when I was first diagnosed. As far as I can remember the doctor informed me then that I had RR. Now I am under a consultant neurologist and he has told me that he doesn’t know if I am RR or SP. Hmmmmm! Best of luck.

Moira

10

Hello again. Oh luv, I can see how upset you are and wanted to try to give you some support and a few words of advice.

Do you go to your appointments alone? I used to and found it helped enormously if I took a friend along. When we see medics and they talk using words we have never heard of, we can become muddled and not remember everything that is said. This is where a second pair of ears comes in very helpfully.

It does matter which type of MS you have, as that could be important when it comes to treatment.

Have you been given an MS nurse to contact when you have questions and worries?

If so ring her/him. Dont scared to do so. They wil give you the anwers yoneed, if you are not seeing your neurologist for a while.

Does any of this make you feel any less muddled hun?

Having a chronic condition like this, does take time to become accustomed to.

The man thing is to pace your activities get plenty of good quality rest.

luv Pollx

11

I was diagnosed with benign MS 20 years ago, when I had an MRI and lumbar puncture. I did not really get any symptoms afterr the first attack until about 10 years ago, so I did not really feel that I had anything wrong with me. It has now got progressively worse. I had another MRI in 2007 and the consultant just said, Yes it has got worse.

I can now only walk about 20 yds with a stick and then my left leg feels like lead and I drag it along as best I can. My balance has become very wobbly and I can only stand up for a couple of minutes, and cannot stand and talk at the same time. I need to rest after the smallest task because of fatigue.

I am basically on no medication and my GP wll not arrange for me to see a Neuro consultant - as he says that there is nothing that will help me so there is no need to see a consultant again. I feel that I now have PPMS - and I know there is nothing to take for that.

So I do feel for you not knowing what is happening. It is difficult to explain to others, and someone always knows someone else who has it. But from what I have heard, it seems that everyone is different, and you need to stay strong for yourself and come to terms with your own unique version.

I hope you have a good experience with your Doc and Nurse - take a list of all your questions as it is easy to forget whilst there.

Good luck.

Jackie x

12

Sewing Chick has it absolutely right. Published statistics say that around 85% of patients who start with R&R will progress into SPMS after around 15 or so years. I had my first MS attack around 22 years ago and it took 10 years to get a formal diagnosis of R&R MS. Over the last 2-3 years there has been a clear increase in relapses but with minimal remission. if you put down a list of possible MS symptoms I would pretty much tick them all. When I last saw my Neurologist I asked the question about my diagnosis and whether I had moved to SPMS. The neurologist said that it might be but it was too early to confirm one way or another. I mulled this over for 6 months and then arranged to see my MS nurse and what i said to her was that in my mind a revised diagnosis was just a series of words and the reality for me was that I had either moved to SPMS or I was still R&R but without the remission bit, so in other words the end result re symptoms/disabilities was exactly the same. I did say to her that I was at a stage now where I would find it hard to distinguish if I was actually having a relapse becuse of the layering on of residual issues that I have (no balance, extreme fatigue, incontinenece/bladder issues, pain in neck and shoulders, difficulties walking, swalling difficulties…), the only way i might be able to discern a “relapse” would be if I woke up with double vision, which was something I experienced around 14 years ago for 3 weeks.

JC

13

Jackie - have you ever got any better after an ‘attack’? I mean have you ever had symptoms that have lasted for a few days and then went away again or lessened. If you have, you don’t have PPMS, because the definition of that is that you never get any better, you only get worse.

If I were you, I would change my GP. I’m not being funny - you should see a neurologist, a good one, who would find drugs or other ways of helping you. It is completely unreasonable for your GP to pronounce that there is nothing to be done for you. He is a generalist and he doesn’t know enough to say this. You could post on here to try and find a more sympathetic GP near you. Your GP is telling you stuff that was true 20 years ago but is NOT true now.

14

Thank you. Yes, i will write out all questions before Monday. This is my first appointment since being diagnosed, so yeh, there will be lots of questions, they will be chasing me out. I need to understand to cope, as we all do I know, I am no different.Just a long time of not knowing.Now I know what it is, I need to know, understand and I hope I get to see the images, larn whats going on in there, what its causing and what lies ahead.

Hubby came in with me to neurologist when we went back for results but on monday he will be taking me to the MS clinic and will leave me there as has to take our daughter to her orthodontist appointment which is half an hour after mine on the other side of the town. Her appointment was the day after mine, but have changed it to same day so that we don’t have to trail 50 miles 2 days on the run and he has taken a days leave to take me as I am not sure if I should drive. I am ok if I haven’t done anything, but once i have walked it just all gets worse and then i feel i can’t hold my foot over the pedal.

Thank you for your replies. It is a scary place.I am accepting of it, to a degree.I try to laugh everyday. I wrongly try to be strong infront of people, and I can feel it welling up inside of me, right now infact, always biting my lip.Not good I know, and I don’t know why I do do it but I know I have to stop it.

I guess I will know whats what soon enough. Feel at the moment all i am getting from quite a few folk is, oh, hubbys sister has had it for 15 years, shes fine, or, aye, lad i worked with got it, he takes tabs, hes fine, you will be ok, you can still do this and that, but thats just the thing, right now, i can’t and its a very scary place to be.

xxx

15

Hi Andie, I know ms can be very confusing. I was dx 6 years ago initially ppms then I remembered I had numbness at various times in the last 20 years so I was re-diagnosed with spms. Since then I have become like Jackie can’t walk far without dragging my left leg with me and very bad balance in fact my symptoms mirror Jackies. When I was first diagnosed I went to classes about coping strategies, dietary advice, therapies etc. they helped me a great deal. If you get offered a course like this I would go. When I was first dx my neuro couldn’t tell me the course my ms would run and just get on with life the best you can. I also find my ms nurse is very helpful. Hope your appointment goes well. Take care Mags xx