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stumbler
3 weeks ago

@amd7l , “crap cap moment”??? Can you explain that term?


amd7l
3 weeks ago

Difficulty in moving, conk body, vertigo


stumbler
3 weeks ago

@amd7l , is this a new symptom or a flare up of a previous symptom?

If it’s the latter, I would arrange to get a urine sample dip-tested with your Doctor, to rule out any Urine infections.


amd7l
3 weeks ago

i did and it waas ok


fuzzy9
3 weeks ago

Sorry to ask you straight but how your doctor made PPMS diagnose? How he was sure you have PPMS? I ask because I have PPMS too which I got 1 month ago.
@amd71


amd7l
3 weeks ago

I tried all the passéd DMT meds and it was useless to my case


stumbler
3 weeks ago

@amd7l , it sounds like an MRI scan is required to see if there’s anything untowards going on.


bernadette
3 weeks ago

@amd71, as you are still having Ocrevus it sounds like the neurology Drs haven’t given up on helping you. If you have a diagnosis of PPMS I doubt that they would be treating with Ocrevus. It sounds to me like a review of your care with your medical team would be helpful on both sides.
Please let them know how hopeless you have been feeling so that they can help and support you.
Good luck


bernadette
3 weeks ago

@stumbler ‘crap gap’ is a slang expression that has come into use by people having Tysabri and to a lesser extent Ocrevus.
People describe symptoms returning or worsening in advance of when their treatment is due. When administration of Tysabri was changed from 4 weekly to 6 weekly lots said they suffered from it.
Generally the Doctors dismiss this as psychological imaginings – ‘cos you know that’s we MS people like to do ;-( Duh


amd7l
3 weeks ago

But believe MME the last month before the infusion the symptoms increase so bad
For most of us no doubt on that


stumbler
3 weeks ago

@bernadette , thanks for educating me. I’m just not keeping up with current terminology…………. 😉

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