Forum

ppms?

Hiya, i have been told have got rrms but am very frightened i have ppms. they have put me on copaxone and was diagnosed a year and a half ago.had an mri a year after having the first mri to compare,and having had spots in brain and on cervical spine they were v pleased as the spots in brain had gone although cervical spine ie neck were the same. therewas a lesion on spine but they didn’t have anything to compare it with as they hadn’t done a mri on spinal chord to begin with. they said that the brain is what they look at to determine what sort of ms it is and mine was positive.

I am however worried as only been diagnosed a year and a half and this june had bowel and bladder problems to such an extent i could not move bowels without a suppositary.This continued till about august, now i can move them but need help every other day and have less sensory feeling in this area and bladder leaks occasionlly.Then in the last month went to optician and my peripheral vision is affected.I feel as if my hands are becoming number every day. went to an apt with the nurse and she said she ll speak to neurologist but am doing well and it is rrms. i am so scared it is ppms and i don’t even have an appointment with my neuro.can i trust them and their views that my mri is positive and i have rrms? sorry any opinions welcomed thanks so much.

Hello, the fact you have been eligible for treatment is undoubtably reassuring you have rrms. MRI scans would have informed your Neuro of this, old lesions versus new lesions etc. People with ppms their MRI scans show no new lesions and therefore qualify for no treatment.

Hi. You need to see your Neuro for answers. Every one of us has different symptoms. You can never tell I imagine whether you’re progressing or relapsing. If you do have secondary progressive though you needn’t feel like it’s the end of the world. Many of us cope with progressive types and have hobbies and pastimes that keep us busy. No it’s not the best news in the world but it doesn’t mean that you’re going to progress rapidly.

I think you’d benefit from seeing your Neuro, but in the meantime make sure you get enough rest. Take care.

Cath xx

Hi, just really want to second what Cath said… PPMS is not the end of the world. In fact someone with aggressive RRMS can be in a worse situation than someone with slow progressing PPMS. It is all MS and different for everyone. On here we are PPMS and SPMS and yet no two of us has all the same symptoms or rate of progression or level of disability. And yet we have all learned to live our lives and cope with this… And you will too. Only your neuro can tell you which type you have… And that can often take time, but it does sound that he’s thinking RRMS for now. Take care, Pat x

Hi,

How can looking at the brain MRI only decide what type of MS you have? I have never heard that before ?

I dont have a DX yet.

Moyna xxx

Yes I have to agree with you Monya. Sorry Bionic Lady but an MRI scan cannot show what type of MS you have. People with progressive forms of MS can show new lesions as well. Apparently PPMS does have slightly higher chance of cervical lesions but certainly not for everyone and it still wouldn’t be used to dx PPMS. A neuro will normally monitor your symptoms over a year or so, and look at your history, to decide if you have a progressive form of MS. Pat x

Sorry it was Bionic Leg. I literally forget stuff in a nanosecond! Pat x