razor 23/09/14
Last reply 3 years ago
Diagnosed with PPMS aged 36

Hi All, i would like to hear peoples opionion/comments on my diagnosis of PPMS at the young age of 36. From what I have read most PPMSers are generally diagnosed later than RRMSers, 40’s to 50’s is the approx. age. I first started having symptoms in early 2009—weakness in right leg which gradually declined over the years, in the last year or two I noticed my right arm/hand following suit with my leg. I was eventually diagnosed in 2012. Im not on any meds except for baclofen for stiff/tremors in leg.

I had a MRI gladoinium enhanced a few months back, the result was ‘ active lessions’, my MS nurse/Neuro wants me to try a DMD. Im not sure which DMD they want me to take, im due an appointment in the next few weeks. It seems like their clueless as my MS nurse wants me, in her own words ‘ TRY A DMD’ as MRI showed ‘active lessions’.

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Anonymous
3 years ago

Are you definitely PPMS? I ask as its unusual (but not unheard of) to have active lesions and DMD’s are not normally offered to PPMS patients as there primary role is to reduce relapses.

Its good news you are being offered them though as if you have active lesions you have inflammation and DMT’s may help.


Anonymous
3 years ago

Hi there. I was diagnosed in 2012 with ppms at 42, since then the neuros diagnosis has changed and they suspect rrms. Everyone is different and I think that over time they can change diagnosis. Good luck with starting your treatment hope it goes well.


Anonymous
3 years ago

I was diagnosed rrms last year 2013. I’m 33. First optic neuritis then MRI. My very first MRI showed ‘active lesions’ (I know what that means but everyone else seems to take this so seriously did I miss something?) About 5 active lesions at the first. The first report ended “consistent with multiple sclerosis” and there you have it a diagnosis. Second MRI more active lesions I think it said some minor subsiding in 2, of the previous but still active and 3,more new active sites. It also said 1,new site was frontal lobe.
3rd MRI said same, minor reduction in previous, now 3 active sites on frontal lobe. What a lucky duck I am.
That’s when they upgraded me.
I don’t know what DMD is. All I know is I get symptoms many different symptoms and they all have peaks and troughs but they never go away. My right side is weak, my hands and back are always numb. My eyes still give me the shits and I’m tired all the time ;(


stumbler
3 years ago

@BillyBonza , a DMD is a Disease Modifying Drug, synonymous with Disease Modifying Treatment (DMT). 😉


Anonymous
3 years ago

Thanks Stumbler, you are good I’ll give you that, like a human safety net, love your work:)


Anonymous
3 years ago

@BillyBonza have you been offered a DMT? Have these been discussed with you? I’d be horrified if not at least discussed as your MS seems quite active.


cazzzzzy
3 years ago

Hi @razor … I was diagnosed PPMS at 36, I have been symptomatic at least 15 years though (it’s actually probably a lot younger when I look back at my health and certain issues I had) … Anyway unfortunately I had a bad couple of doctors who kept passing me off as anxious even though I wasn’t anxious and because I wouldn’t take the beta blockers etc they were trying to push on me I was labelled as a difficult one 😕 …. Anyway sorry I’m ranting, I should’ve been diagnosed at least 15 years ago which would have been my early twenties…

Sometimes I just think all types of MS is MS and every case is very individual with progression – either that or they are completely different illnesses altogether…

Now my neuro is questioning PPMS, I think they might come back with SPMS, I have an appt to see her Tuesday so will see what her guesswork is after she has seen my latest MRI 😕

xxx


Anonymous
3 years ago

Hi sandwich,

Yes I refused fingolimod initially because my then neurologist would not, that’s right would not discuss or provide me information on any other meds when I asked. He actually would not even discuss particulars of fingolimod he was just writing me up a script and putting me in the database or nothing. I tell not 1,word of a lie.
So I found a new neuro, but I had to wait 7 months to see him or more precisely I had to wait 9-10 months after diagnosis before I got to see a doctor willing to look at anything but fingolimod. The 2nd neuro is still a fu***** wank**! Lucky for me I had identified the drug I was willing to at least try. My 2nd neuro avoids talking about anything remotely ‘human’ and he tries to hide details from me as to the extent of my situation and I think that’s largely due to his belief that knowing makes it worse because I will then think about it too much? Its my fu***** medical info and life di**head! I was I could say that but there are only 8 neuros in this state and so I better not burn them all too fast.
Anyway so I’m taking tecfidera. Its doing sweetFA it would seem. Next MRI at the end of October 2014 and my next move will be based on those results.
Yes it is progressing rapidly and quite honestly, I’m fu****. If my experience thus far is anything to go by double ******!
If the tec shows to be doing nothing I don’t think I’ll bother with any alternative excuses I mean medications. If someone, anyone can show me good evidence and put forward a compelling argument back by fact, written documented supported evidence that anyone in my position has benefited long term from any single one of the drugs available my ears and mind is open and ready to receive. Otherwise fu** everything.


angelbum
3 years ago

@cazzzzzy I would really like to speak with you . I have been battling to get a diagnoses and I know how this feels . Did you have relapses and have symptoms all that 15 years did you keep going back to the Dr trying to figure out what was wrong ?


cazzzzzy
3 years ago

Hi @angelbum ! … (Great name 😉 ) … Sorry to hear you are going through the challenge of trying to get doctors to pay attention to you and get what you need – I have lived this and it is awful!

I’d say I probably started having MS symptoms when I was in my early teens or even just as puberty started, I had such bad headaches, they were awful and I also had pains in my legs but my mobility wasn’t affected and these headaches and pains used to come and go and I know these were probably relapses, I also had extreme tiredness, it was not a normal tiredness and this is something that never lifted, this I now know was MS fatigue….. Then over the next 10 – 15 years I did have random days of numbness and blurred vision, in fact I had every MS symptom listed but these came and go so they must have been relapses… Then about 10 years ago my walking started getting worse and this was a gradual worsening progression – the distance I could walk got less and less and heaviness in my legs got worse and worse…. This is probably SPMS but I have been dx PPMS and that is probably because they won’t admit to their failings…

There is a lot to my story and yes I did feel so ill for the most part (99% of the time!) but that is the gist of it, I won’t bore you with the details but yes over the last 15 years (at least) I was at the doctors all the time trying to get them to listen and help… They had it in their heads that I must be anxious, I wasn’t anxious but obviously worried about what was wrong with me, they must have had me down as a hypochondriac which I am not but for goodness sake I could hardly walk and every part of me was failing, I knew I had MS and this is also in my notes – the fact that I said I knew I had MS … They also must have looked at me as difficult because I wouldn’t take any anti depressants – pffft I wasn’t depressed, I could hardly walk so why would I take pills that I didn’t need !?!

They also refused tests that I asked for and thought because my blood tests were ok that I was fine…..

When admitted to hospital (after threatening to admit myself because I couldn’t walk!) the docs there were great and knew what was wrong straight away!

But what is your story? I hate to think of someone going through what I had to deal with and will try and help where I can or try and get an idea of what might be wrong and what tests you should be having! I have learnt lots over the years whilst trying to find answers!
What are your symptoms etc? Feel free to message me if you’d prefer!

xxx


simplesimon84
3 years ago

Hi @razor. I was diagnosed with PPMS last year at the age of 29. I think though I was experiencing symptons for quite a few years. The main symptons was with with my walking and balance. I am currently on no medication, although my Neuro is now putting my case forward since my last appt in Jan. My view has changed since being being diagnosed and I would say a diagnosis of anything can happen to anyone at any time. There is, unfortunately, no age limit 🙁


angelbum
3 years ago

Dear @cazzzzy I thank u so much for replying to me . Its certainly a rock and a hard place being undiagnosed ! What can u say my symptoms sound identical to you . When I was 13 I just found out from mum the other night I had what they thought was migraine but my arm was limp and useless the Dr came to house and said it hadn’t seen anything like this in all his gp years ! He put it down to a migraine . Fast forward few years 15 years old headache speech vision walking affected adimmitted to hospital


angelbum
3 years ago

Didn’t seem to email all my message there . Could you private message me @cazzzzy please I would really like to ask a few things but typing all the time can be tiring as you know so many symptoms over years and painful emotions as well . Please pm I would be so si grateful xxx

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