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Is it 'typical PPMS'

Hey I am new here and could need some advice. I have no diagnosis yet but i will see an neurologist soon. I know noone can help me being certain wether i have or not have PPMS. But you seem to have a lot of experience in this area. My symptoms started very slowly and are: - for maybe a year: problems urinating, not being able to do ‘it’ all at once - about 6 months ago: problems with my digestion, stomach and i have problems going to toilet (but no constipation), just as if my rectum doesn’t seem to work anymore - on and off since 3 months: extreme fatigue, feeling of surrealism, weakness of the legs and arms, balance problems - tremors ar night or when it is chilly outside (but not visible), also on and off - last week: tingling of the right arm and leg - sensitive to temperature changes To me this sounds like classical PPMS symptoms - but there is one thing: I am only 19 years old. What do you think, does this sound like PPMS? Could it still be RRMS, even if some symptoms (especially bladder and bowel) are lingering for so long already? Or something completely different than MS? Thanks for reading all of this, Mimi

Hi Mimi, PPMS at your young age seems unlikely. A diagnosis of a Neurological condition takes years of tests, mainly to rule out other conditions. There are NO classical/typical symptoms of any of the 4 types of M.S. Everyone is completely different.

It’s horrid being in the Limboland of not knowing what or if you’ll have a diagnosis. Good luck

Chrissie

Hi

At the age of 19 I think you are unlikely to be given a diagnosis of PPMS. That’s assuming you have a diagnosis of MS at all.

There are other conditions which look a lot like MS to the untrained eye. To be honest, you’ll have to see your neurologist, go through your personal history, have a neurological examination and then be referred for further tests.

Only then would you be given a diagnosis of MS.

PPMS as a diagnosis is not generally given to someone of your age, with symptoms only going back a year. Unless there is extremely compelling evidence seen by the neurologist to indicate that it is progressive.

Supposing it is MS, relapses can literally take months to even partially remit. So the fact that you don’t seem to have had much improvement doesn’t mean that it couldn’t be relapsing remitting MS.

What I suggest is that you start to keep a diary so that when you see a neurologist, you can pinpoint what has been happening, when symptoms began, what has improved or whether certain symptoms have not got any better at all.

We are of course assuming that you’ve seen your GP who agrees that there is something wrong neurologically and has referred you to a neurologist. If you haven’t, I think you should do so.

Sue

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Hi Mimi,

MS is a snowflake disease, we all have our very own version of it - there is no typical, just a few general differences to RRMS… in that we don’t ever experience MS remitting. We may have some days that are slightly better or worse but problems don’t generally start and then disappear after a time. We’re generally a little older but that’s not a given either. I currently have copies of my last MRI’s and could only really read one thing and that was purely because I had contrast and I know that if there’s any activity it will be shown in colour and I was once shown this by my neuro. So out of hundreds of images, that’s all I could tell you is there were no pink bits - seriously, you need a lot of experience to have the first clue.

Good luck with finding an answer but I hope it’s nothing too bad.

Sonia x

Could be fibromyalgia, lupus, stress, anything. No reason to think what it might be. How come you see a Neurologist and not local gp doctors surgery? MS not good to have it destroys nerves and gives ppl brain damage so your body don’t work properly. Your 19 and enjoying life don’t worry what you might NOT have.

Hey, Its me again. I am giving a quick update, just in case this might help someone, who finds this thread, for example through Google search. I am 99% sure now, after several visits of doctors that I don’t have MS, but had a very strong Vitamin B12 deficiency (as well as Ferritin and Vit D). Wishing all the best to all of you.

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Hi,

Vit B deficiency does cause symptoms similar to MS so it’s good that you can correct this.

Thanks for letting us know.

AD

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