could they be wrong, could i have ppms instead of rrms.... any thoughts.

Hello everyone I hope you are all well, here’s my story. I started getting mirgrains at the age of 11, then I got glangler fever a few months after, I always had headaches as a child and was put on meds for them which helped. I grew up and started a family as you do, and with baby number one the migraines came fast, docs put it down to pregnancy as they do, had another baby 19 months later still getting head pain everyday. 3 years later, one day after work I got really I’ll and thought I was having a stroke, went hospital and they thought the same, run all the test and found white dots all over my brain, god was I in shock, few months months later see a neurologist who sent me for more tests because she wasn’t sure wot was going on, had the tests done all again and then found out I was pregnant again, which was not planned at all, so that put a hold on thing for a year, in that year I have gone right down hill, very bad memory numbness down left side of body head pain morning noon and night and now I I use sticks most night as my legs are to painful to move, see an ms nurse that said I have rrms and I have to start injections next month, she then send me for as lp 3 weeks a go and God I will never have that again. I’ve been having a relapse for 3 months so I’ve been told, so on Medrone again. I got a bad fealing it’s not rrms and ppms, because of the speed of symptoms, and the fact my legs are so bad, I can’t get out of my bed in the morning without help from my oh, if I sit for more than 10 mins the legs or arms go numb. I having burning in my left side of my face most days, and take a truck load of meds, which don’t work so well now, I only got told in December just gone that I have rrms by letter in the post, but I guessed I had that from my nhs background. I’m just waiting on the lp results in 2 weeks, could that tell me which one I have, something just won’t sit right about this diagnoses. So sorry for the life story, just needed someone else’s advice, with 3 little children that need there mummy. Thankyou lisa.

Hi Lisa and welcome to the board. Nice to see you on here but I’m so sorry to hear you’re having such a rough time. No they can’t tell from the LP what type of MS you have. They do the LP to see if your immune system has been active in your central nervous system… and if it has, along with your brain MRI and your symptoms, they can then use that info to see if it’s MS. The only way they can tell if it’s PPMS is by monitoring it over a period of time. When there are no relapses or remissions but a steady progression, they can then diagnose PPMS. I think from reading your post that it does sound like RRMS and that you are having a very bad relapse. Relapses in RRMS can last a long time and can be very severe. Generally with PPMS the progression is slower… although of course there are exceptions… but generally it’s slower than what you describe. However I could be wrong. It is really only your neurologist who can tell you these things. If they are offerning you injections, it does sound as if the neuro feels sure that it’s RRMS as there are no treatments for PPMS. Wait for the LP results and then have a talk with the neuro. I don’t really understand why it was the MS nurse who told you it was RRMS and sent you for LP… it should have been neuro and they would normally wait for LP results… but I guess it’s not always the same everywhere. Only 2 weeks for LP results… make sure you see the neurologist and ask questions. Write them down so you don’t forget them on the day. It is very hard struggling with this and 3 children… but remember, if it is RRMS there are some very good treatments to help. Take care, Pat xx

Hi Lisa, I’m sorry to hear about what sounds like a nasty relapse. I tend to share Snow Leopard’s views on this (although each case can be quite unique).

Whist I’m new to the site, I too was diagnosed with Benign / RRMS in 1993 and much more recently progressed to SPMS. I am guessing that the treatment you are being suggested is probably Rebif, Betaferon or Copaxone injections…( there are a few others currently approved). I have been a Rebif user (has been good for me) for more than 10 years (stopped recently with progression to SPMS and am soon to join a new drug trial for SPMS).

Try not to worry too much (I know, it’s easier said than done!) as it will add to pressure and possible anxiety which do nothing to help… I am not medically trained, this is just my opinion and expressed in the hope that it might help you a little… Do listen to your neuro and MS nurse as they have the knowledge and experience

Hoping you come through the current episode quickly and recover fully or as close to as poss.

Best wishes to you and family.


Thankyou pat for all your information and taking the time to write back, I asked why I had to have the lp after they already sent me a letter saying I have ms, all they said was we need it done so we know what injections to start you on, so I had it done. And now it just the waiting game. My ms is very fast moving so it must be rrms. The ms nurse did say the injections should slow it down but wont stop the relapses. I will let you know what they say when I go back in 2 weeks. Many thanks Lisa.

Hi lisa, I’m also newly diagnosed ppms, I can’t offer you experience or knowledge of the system, I can echo other forum members suggestions on writing those questions down for your appt’ don’t let the stress hitch a ride!

I have prepared a basic table ready for my appt on Friday,based on a diary of the last 7 days of my daily life. I have categorised the table symptoms all 17 of them,frequency,effects, management (meds, changes ive made to reduce symptoms mostly not good one’s) I am giving copies to my G.P,neurologist & MS nurse if I have one yet! It has helped me cope with the stress & feel more in control, I want to be heard,we maybe just a number to the system but we are people with lives to live to the best possible standard. Best of luck x

I’m going to ask to see my table in my file on random occasions and update.Just to check !!

Hi Lisa,

I, like the others are sorry to hear that you are having a bad time.

The problem with MS is that no one can give you an indicator of how this is going to pan out for you. It is only when we look back that we can see how it has been.

I was diagnosed with rrms in 08 but then in 13 I was re-assessed after more medical interventions as being ppms.

Each persons case is different and all we can do is help one another.

Sounds to me like you are having a bad relapse.

Please just take one day at a time. Stress is really bad for this condition, so if you can try (I now that is not easy with a young family) and keep the stress levels as low as possible. We all learn our own ways of coping with stress. Also, try and look after yourself as much as possible. I have the flu jab every year, as it is best to okeep infections to a minimum too.

We all help each other on here so please keep posting.

All love