Hi everyone. Posting as I was told last night I’ve probably got MS and am scared that my symptoms point to PPMS or an otherwise poor prognosis. Grateful for any thoughts or advice, and any stories of people who had similar symptoms.
About me: 37yo female. Main symptom that made me seek help has been foot drop that started very mildly one day seven weeks ago as I was walking to work. Came back a couple of weeks later and resulted in me tripping a few times. It’s now there mildly any time I walk for ten mins or more, and if I fast walk for an hour I’m properly limping.
The other symptom that led to the MRI is that over the last few months there have been times I’ve felt I really need to wee, but can’t. Same experience as I had after C-section last year so I thought it was that at first.
Last week or so I’ve also noticed a crawling sensation down the right hand side of my spine after bending forward, and have struggled to push for a bowel movement at times. My left leg and arm have felt a burning cold sensation on and off.
Only other thing that I don’t know whether could be related with hindsight is from November to about March I had a weird sensation in my right eye where it felt like there was dust or something in it (but there wasn’t) and it felt blurry and like I needed to blink to relieve it. That seemed to resolve itself earlier this year around the time that eye watered for a week so I assumed it had been some issue with the tear duct, but who knows.
Anyway, I had an MRI last week and it shows one patch of inflammation in my brain and two in my spinal cord part way down my back. They’re going to do lumbar puncture to rule out anything that could be mimicking MS and start me on steroids to try to get my leg working properly.
The neurologist tried to be really positive about a potential MS diagnosis and said he didn’t think PPMS typically presented like this. But everything I read online seems to suggest foot drop and bladder issues are classic first symptoms, and that if you have early lesions in your spinal cord the prognosis is worse.
My son is only 16 months old (and we were hoping to try for another) and I’ve always been super active. The thought I could be in a wheelchair in a decade is terrifying me.
Any thoughts or experiences or tips very much appreciated.
Thank you,
Emily
Hi Emily, I also had foot drop (ongoing) as one of first symptoms plus amongst other bladder issues and I was diagnosed with RRMS. Try not to jump ahead, easier said than done though! I queried if it could be PPMS with the MS nurse and got a swift telling off and a reminder if your MS specialist has diagnosed RRMS that that is what you have.
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It’s usually RRMS. Your expert medical advisors think that if it’s MS in your case, then it’s RRMS. So there you go.
When you suddenly find yourself staring down the barrel of a life changing diagnosis, it is completely natural for your danger-spotting instincts to go into overdrive. It is hard to hope for the best and all too easy to think the other thing. That’s OK. You’re just being a normal human.
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Hello Emily. I’m no medic but: my understanding is that the ‘progression’ in primary progressive is usually a slow progression and the symptoms you have could equally well feature as early symptoms of RRMS ( I wasn’t aware that there are ‘classic’ first symptoms of PPMS?).
I’m going to stick my neck out a bit and say that when first diagnosed with MS, or when we are told it might be MS all of us immediately assume the worst ( perhaps some sort of in built reaction that everyone experiences when faced with a threat or danger ?).
I have to admit that my first and overwhelming thoughts and fears were of : wheelchair bound in a few years and from then on rapidly increasing disability. That was around 19 years ago and other than pushing my old Dad (RIP) in a wheelchair I’ve not been near a wheelchair! I do use a mobility scooter if walking for more than 10-15 minutes but otherwise happily potter around the house and garden . This is all a long way of saying- don’t rush ahead , recognise your fears yes but definitely don’t let them overwhelm you , and prepare for the worst yes, but also hope for the best ( and if your Neuro thinks it’s RRMS then the disease modifying treatments/ drugs these days are better and more numerous than when I was diagnosed!)
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Whats foot drop lol.
2000 first symptom was blind in one eye. PPMS is classic start Optical Neuritis.
I have had PPMS since 2000 although it wasnt diagnosed until 2016.
oh i am 73 now go me. Still walk in the house, not very far.
NO LESIONS on brain which is classic for PPMS.
FEAR NOT as to be honest its easier to deal with then RRMS i have been told by many.
3 months ago ended up in hospital with suspected stroke, they did a full MRI and oh dear found NEW LESIONS.
this shook me, but still got to keep going.
AFTER BIRTH its classic for woment to suddenly get hit by RRMS
if you have caught it early you cann get on DMD, which you need to do.
good luck in your journey if it is MS. enjoy your family you have a long road ahead the way to deal with it, well just deal with it, could be a lot worse. Other things out there not so good.
xxx
Hi,
I was diagnosed with MS in my mid 40s and I was also convinced it must be progressive. When you are worried about it, everything you read points you in that direction. And since I had pretty constant symptoms without obvious “relapses”, I thought that would be it. But my neurologist immediately put me right that I was RR.
So you can have quite a few “things” going on and still be RR. Also, MS symptoms are so broad that it may be not all of your symptoms are MS. It can be really hard to know whether bladder problems or even foot drop are caused by the MS itself. I had foot drop recently and the MS nurse thinks it was a peripheral nerve issue.
The prognosis also varies massively between people. I was diagnosed a couple of years ago with a spinal lesion and lots of brain lesions, but still a regular runner, for example. Some people are less lucky. In the early stages, I felt it helpful to focus on getting myself onto the most effective treatment - that’s the one area you may have some control. And remember there is lots of research going on all the time.
There are specialist nurses who can help you with things like not being able to wee - so apart from treatment for your MS itself, you should be able to ask for help with some of these symptoms.
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