Hi everyone I’m new on here so don’t know really what to say. I’m waiting for a MRI to try and get to the bottom of what’s going on. I think I have PPMS but my neurologist is saying otherwise what wereally Your first symptoms if you have PPMS? I also had eye problems about 3 years ago blurred vision like looking Through a pain of glass with water running down it could this be related? Cheers John.
From what I remember my foot started dragging after a few miles and Paresthesia was a nuisance, but it’s not much of a guide because symptoms can vary a fair bit. To be honest, getting diagnosed made no difference at all, as there are no approved treatments for PPMS anyway.
Best let your Neuros investigations run their course and if he suspects MS then a lumbar puncture and evoked potentials test will probably follow.
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Thanks whammel I have had a emg to rule out mnd but my symptoms are always there it’s so annoying I thought ppms only affected the spine but my eyes and forehead are getting effected. But today my Legs are going nuts. Best wishes john
I also had walking problems but they came and went. I was still teaching at the gym 3/4 weeks before I was diagnosed.
Hindsight is amazing, I remember the numb big toe, some 12 years before diagnosis.
Sonia x
Thanks everyone
Hi John
welcome to the forum, lots of friendly people here, always willing to listen and offer advice when they can.
My first symptom, which was yonks ago, was a numb patch on my leg, which was monitored by my gp, and eventually sent me to a neurologist. Many investigations later…and the rest is history, as they say.
Stick with the tests, and if it is ms, it will eventually show, but have patience, it can be a long drawn out job.
In the meantime, your GPs can give you medication to help with the symptoms, if they are causing problems.
Hang in there, any questions ask away.
Pam x
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Thanks pam I’ve seen the neurologist 4 times now and on every occasion he has done a strength test there is no weakness I’ve had a emg and nerve conductivity test which came back clear. Had a MRI scan 3 years ago and that to was clear. I’m just scared it’s ppms and I will progress quickly. Would ppms symptoms always be there or would they come and go?
Hi John
Its difficult to say exactly, as we are all different, ms being a very individual illness. For me, I have symptoms every day, but to varying degrees, I can have quite a good morning, but the afternoon could be dreadful, and vice versa, it takes away being spontaneous, but ms affects everyone differently.
Even if you do turn out to have ms, please don’t think it is the end of the world, there is a very worthwhile life to be had, you adapt to compensate. I have had ppms for more years than I care to mention, and yes I use a powerchair, but It is just a tool to make life easier, progression for me has been on a slow gradual deterioration route.
Keep your chin up, take care.
Pam x
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Hi John I had pins and needles leg weakness stumbled a lot and legs got confused tripping me if running apart from that I was fine. Eventually I was diagnosed with ms over twenty five years ago. It’s been a fun ride. Everybody is different it’s hard to say what will or won’t happen. Just smile and laugh a lot because it confesses everyone.
XXX Don
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Cheers don can I ask you what type of MS do you have? I feel terrible today very weak and the electric sensation in my legs is going nuts. I also have a funny sensation in my gums.
Hi John, most of us on here have PPMS and some have SPMS (secondary progressive) which means they had RRMS first.
Like others have said, it’s different for all of us and getting a diagnosis can take a long time. Took me 2 years to get dx of MS and then another 2 years before they said PPMS.
What waved a red flag for me in your post is ‘electric sensation in my legs’. Apart from fatigue, that was one of my first symptoms and I now have it 24/7 (and sometimes spreads through my torso). That I think is very MS-like.
Be patient. It’s very rare that anyone gets an MS dx quickly and even then it can take time for neuro to work out if it’s PPMS. Unfortunately with a clear MRI it’s even more difficult. I did have ‘bright spots’ on brain MRI but still had to have a lumbar puncture to confirm dx.
All the best,
Pat xx
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Thanks pat feel really low today all this is getting me down. My neurologist thinks it’s benign fasciculation Syndrome because I have had muscle fasciculations. My eyes have become dry and my right leg and left arm are weaker Than they were. It’s all a bit to much for me at the moment. Xx
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Hello John.
Like many others here I’m well into the PPMS beast. My first symptoms were pins and needles and numbness. I’m weaker on my left side now. All I can say is that despite the severity of it, I have tried to keep going. It didn’t mean the end of my useful life, it just meant having to adjust and plan things. For a long time after diagnosis, I was still driving and camping all over France and Spain. There were some rogue symptoms which came and went so now I expect to be puzzled.
Best wishes, Steve.
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Cheers Steve thanks for the feed back could I ask how long have you had ppms and at what age were you diagnosed? Hope you’re ok Kind regards john
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Welcome , John, to the site where none of us wants to be, but if we are, everyone is is supportive and the info you get back is invaluable. I started my journey 5 yrs ago. MRI, lumbar puncture, etc etc all clear, but all the symptoms fit PPMS. My neuro says tests might not show proof for 10 yrs. but if it walks like a duck, quacks like a duck…diagnosis or no diagnosis, they can’t do anything much. You just have to get on with life and face it. But there is a heap of advice out there and getting into services of the occupational therapist and the neuro nurse is essential. Good luck!
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Thanks lynda can I ask you if your symptoms came and went or stayed and got worse over time. I have had numbness in my left arm and shoulder and in my face and forehead. But that has passed and gone back to normal.I seem to get relapses like cold feelings and tingling but only in isolated areas not whole arm or leg. Cheers john
Thanks lynda can I ask you if your symptoms came and went or stayed and got worse over time. I have had numbness in my left arm and shoulder and in my face and forehead. But that has passed and gone back to normal.I seem to get relapses like cold feelings and tingling but only in isolated areas not whole arm or leg. Cheers john
My own situation is that I began with foot drop and balance problems but from there, like a snowball effect, I’ve gathered others on the way, mainly to do with mobility, but now including difficulties with left hand dexterity and voice. Everyone with PPMS has a different progression - mine has just been a decline with no stops/ remissions/plateaux. You learn to tune into your symptoms and be aware of daily changes. It’s quite good in the early stages if you jot things down to keep a record, so that when the medics ask you things you have a sense of a pattern. I noted things in a cheap diary like ‘trip fall’ or ‘tingling in big toe’. It’s also a good way of monitoring and therefore managing fatigue.
Thanks lynda I’ve got an appointment for MRI scan on the 30th of this month only for the brain I would like my spine to scanned as well but my neurologist must think that’s all I need. Fingers crossed. Best wishes john.x
I had my first symptom 2000, went blind twice, 10 years later i got diagnosed with MS, after a second bout of Optical neuritis, i had lots of positive tests in between.
My neuro finally said it was progressive.
Every MRI i had though showed lesions.