l am 51 years ago, up until 6 months ago in great health no symptoms then l noticed when going for walks l felt a bit off balance and hard to walk up stairs, l went to my doctor and he took an xray of my knees and said l have a little bit of arthritis in my knees, over next 6 months walking got harder and harder and went back to my doctor lots of times and he kept saying its Arthritis , then a couple of weeks ago my legs gave way in the supermarket and an ambulance took me to hospital and they did a MRI scan, l thought l was in hospital for Arthritis so l got a huge shock when the hospital doctor said l got PPMS, so much so the nurse had to sedate me. They said l got lesions in my spine and brain,they said the MS started 6 -12 months ago so l guess l caught it fairly early. Everything seems normal except unsteady walking and slight numbness in my right leg, l am OK walking short disatance like walking around the shops but cannot go for long walks. l have already taken a 5 day iV drip of steroids which helped me walk almost totally normally but l guess the good effects steroids will wear off and l will return to having walking diificulties . l am seeing a neurologist for the first time in a few days. l will ask him if l can take OCREVUS . My aim is to try and stop progression and keep my mobility to walk without assistance , but l guess from what l read totally stopping progression even with drug treatment is unlikely , the best l can hope is to slow it down and feel very depressed that most likely it will become increasing harder to walk over time and fear all the other possible physical effects of MS that might come in the future. It feels like my life has been ruined but l hope l feel better after l speak to my neuologist about my treatment program
My sympathies and best wishes to you and I hope you get some clarity, guidance and a proper diagnosis from the neurologist.
( I’ve never quite understood how PPMS is diagnosed but I must admit that what you say about having lesions and then being told by a Dr that you have PPMS confuses me. From what I understand most people start off with some obvious symptoms which lead to referral for an MRI and neurologist and it’s only a neurologist who can make the formal diagnosis- based on the MRI, your history of symptoms and any Lumbar puncture.
I have RRMS following a bout of optic neuritis which led to an MRI and seeing a neurologist who then discussed his diagnosis and treatment with me. Like you the MRI showed up a few lesions. )
Hi,
It is a worry but I have many posts from people who have had MS for many, many years with not too much changing.
You will just need to wait and see what cards you have been dealt (easier said than done I suppose).
Just take each day as it comes at the moment and enjoy what you can do.
The uncertainty with MS is one of the things that I find most difficult but no one can predict the future, so don’t needlessly worry about what might not happen.
EH
thanks, yes l was admitted to hospital after l collapsed and they didnt know why l collapsed and neither did l, l told them l have had trouble walking past 6 months and my GP said it was arthritis, they had a MRI scan done at hospital, and a lumbar punture the 2 or 3 doctors at the hospital who l spoke to said they are almost totally certain its PPMS but l need to see a neurologist in a few days to totally confirm it
Good luck when meeting with the neurologist.
EH
JUSt to update l just saw my neurologist today for the first time and he said his 95% sure l have RRMS not PPMS, l was sure l had PPMS because the doctor at the hospital who diagnosed me said thats what l have, but he wasnt a neurologist . If a trained experienced neurologist says its RRMS then should l just assume his correct. He said l have a choice of two treatment drugs TYSABRI once a month or OCREVUS every 6 months. He said both are good but TSABRI is the better choice as it would be slighly more effective
That is definitely better news. Tysabri is great. I’ve been in it for many years and remained stable throughout and my RRMS is very active when allowed to be. Unfortunately, I had already acquired quite a lot of disability. In your case, it’s an excellent thing if you can get started before there’s too much harm done.
Thanks, allthough l caught my MS before l got lots of disability l have lots of lesions more then 20 maybe 30 , but l hope the treamtnet stops more