So it’s been a while since I posted. And I’m two and a bit years into the MS diagnosis train. And thank you all for your ongoing support.
Firstly diagnosed with migraines and worrying, then functional neurological disorder. I have seen a wonderful professor in urogynaecology. He thinks my bowel, bladder and various down there problems are early MS (without me saying anything about my journey)… And believed me and this two year fight I’ve been having with various doctors once I told him the whole thing.
He found neurological damage today and will refer me back to neurology and order full MRI brain and full spine, which is great. I now have hard evidence that I have Neuro damage.
So hopefully I’m one step closer to a diagnosis.
My question is to people with PPMS. Because this has never gone away in the two and a half years. I have had constant symptoms with a slow worsening. The bladder and bowel thing is new, but the tingles, tiredness, pain, spasms, etc etc have been there relentlessly every day.
Most stories I read (correct me if I’m wrong) people seem to have one thing happen one day, like a foot goes numb, maybe spreads and lasts for a time and goes. Or one day their leg doesn’t work. Then later (months maybe years)something else will take a hit. But each has a specific period and then quiet for sometimes quite a while.
This is not my experience. Everyday I have symptoms to varying degrees. But they are definitely gradually worsening and a new one adds itself into the mix every few months.
How does PPMS feel? What is your experience?
I just want to ensure I’m prepared.
Thank you, lovely people. Xx