I was diagnosed with PPMS on my 40th Birthday … Life begins at 40 so they say !
I was diagnosed with PPMS on my 40th Birthday … Life begins at 40 so they say !
Diagnosed 2 years ago age 46
Only 37 4 months ago
Hi It is my husband who has PPMS and he was diagnosed last October at the age of 40. He was told by a back specialist that it was just his age in Dec 2011!! After we returned from Egypt last June I insistent on going back to the doctor as I was sure it was neurological. Thankfully this doctor agreed with me and we saw a neurologist two weeks later, he had various tests done at St George’s in Tooting in September. We then had confirmation in October and we are still trying to come to terms with everything.
… following on from my diagnosis in 2011 as mentioned on here a few times now: I had a very bad double cavity Pneumonia in October 2010, in hospital for 3 weeks. Cut a long story short… The last week i was in hospital, i was up & about walking up & down the corridor, but soon complained about a dragging foot. I was then prodded & poked for yet another 100+ blood tests etc… then sent for an MRI, which they found spinal cord damage, then on for a Lumber Puncture in Walton. Results came back: PPMS.
I believe all humans have MS in some way and it takes a trigger to start it off. In my case a complete immune system breakdown and a bodily traumatic experience. Cancer is the same… it takes a trigger to start it off. Many people live with MS, they just dont know it. Like OCD, we just dont know we have it until something happens and we go for a diagnosis.
Dx in Feb. Age 42. I was a real “sport billy”, full of beans and certainly not shy. This has really knocked me for 6. I’m watching myself turn into a grumpy old git!!! And my confidence has taken a battering. I come on here and realise I’m not the only one with problems. I can offload and people can understand and empathise. Thank you. Have a pleasant evening. Al
Thanks allyh38
I hear you. And mirror you. (save a year!)
When I posted this I was becoming increasingly irked by being regaled by all the RRMS horror stories/bios that dominate what people think Ms is, the sort of “wow, but your speech is fine” or “gosh, you’re lucky to have no eyesight problems” or the most common "a friend of my friend has to stay in bed for three days solid, but then she’s fine…(always a ‘she’, incidentally).
Hi Clucker Pigeon, You are more likely to hear about females with RRMS as the vast majority of RRMSers ARE female. PPMSers are split evenly between the sexes! Teresa xx
I was diagnosed with PPMS in January this year at the age of 41.
If you are feeling isolated, there may be a a local branch of the MS Society you can join. I joined my local branch last week and am already very happy with the help and guidance I have received. I’d certainly recommend it.
Hiya I’m 43 and got my diagnosis today! I’ve had 2 years of yes, no, maybe, but I’ve got the complication of spinal cord damage so it’s been difficult to be fair. I’m determined to stay positive and continue to live my life, but you’re not on your own!
Hello Min and welcome!!!
Blimey you really are a newbie… today!
Did they tell you it’s primary progressive hon?
Hell of a shock getting a diagnosis but maybe you were expecting it. I know I was. By the time I got diagnosed I would have been surprised if it WASN’T MS!
Why don’t you start a ‘new thread’ Min… people might miss you at the end of this thread.
This is a great place to be… we are all in this together and if you have any questions someone here should know the answer.
Take care and look forward to seeing you on here again,
Pat x
Hi Pat Yes, they told me it was PPMS, I’ve been on the forum before, was in limbo land for a long time, MS first suggested a year and a half ago but got the “maybe, no, maybe” that seems so common. Today I saw the neuro and I have 5 brain lesions and my LP is positive. The people on this site are so supportive which is why I came on today, to show my 15 year old daughter where she could also get answers or support. Now comes the task of informing insurance, DVLA, employers etc… Thanks for your response Pat, my daughter Jen was very pleased that someone so positive replied and so quickly that I think it reassured her that she could seek help here.
Oh darling you can always seek help here! Often find people on here know more than the experts!
Well you seem to have been down similar path to me. First was a suggestion of MS and then a dx about 2 years later… although I wasn’t told it was PPMS for about another year. Anyway got the initial MS dx in April 08.
Remember, as with RRMS, PPMS is different for everyone. For loads of people it’s slow progressing. We have a chap on here who was dx 40 years ago… and still living independently and everything. When he was dx there weren’t even different types… it was just MS.
Also keep in mind that there is LOADS of research into PPMS right now… won’t be long before there are new treatments, and if you scroll through the posts you wlll find some treatments now that look very promising.
Glad you have a lovely daughter there to support you. Makes all the difference hon.
Remember, lots and lots of rest. Symptoms can still come and go with PPMS and when I’m having bad symptoms I know I need to rest. Proper rest… in other words, bed!!! (although you probably know all this anyway so sorry if I’m telling you stuff you know).
Take care hon. Very supportive bunch of people on this board. We’re not a big group… but really are there for each other. (small but perfectly formed LOL).
Pat x
Hi, I was diagnosised at 50 undersiding what type? New consultant last year confirmed ppms! Looking back at my medical history I first showed symptoms 1992. It wasn’t till walking became tiring and tripping up that I went to the gp. The rest is history!
The most ridiculous moment of my day today was when my Neurologist rushed after me in the hospital after our appointment and said “Mrs Eddington, Happy Birthday!”
I didn’t know if I should cry or thump him - but being typically polite, I thanked him 
I turned 43 today and he’d just told me it was highly likely to be progressive sigh
Sonia x
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Happy birthday for yesterday Sonia. I’m not giving bad news along with that so don’t thump me, just accept my good wishes please. Is it my imagination or do most women with PPMS either start with symptoms or get a dx in their early 40s?
A belated Happy Birthday Sonia… But sorry it came with such bad news.
Were you expecting that news at all?
Pat x
Hi Min, So sorry for your diagnosis but welcome to the PPMS gang. We are always here to rant and rave at (if you want) or just to chat to. You’re right, as a general rule, PPMS is diagnosed to people 40 plus but it can be earlier than this. Also, an equal number of men and women suffer from PPMS. However, the vast majority of RRMSers are women! Teresa xx
Pat, I was fearful of that news yes but wasn’t really ready for it either - didn’t realised til I lost count of how many times I cried yesterday.
I had a day where I struggled walking about a year ago (July 20th I went to London to see the World pole sort championship!), I dismissed it as being down to an old foot injury, being sat down for hours and outside it was raining and lots of cobbled streets… I was fine back on a flat surface at Waterloo station!
The steroids did seem to help but didn’t fix things either.
I think the idea that I won’t get better is freaking me out still a little, there’s a blinkin pole in my dining room and I had fully intended to use it (still hope to!) but I can’t dance for toffee now. It will now be an exercise tool - simplez!
Sonia x