I don't know what's happening. PIRA, relapse or SPMS?
Hello!
My name is Paul and I'm from Romania. I've been misdiagnosed since 2012.
My relapses looked like this:
I don't know if the first two were linked to MS or other problem.
First - Dec 2012: Pain in both feet after exposure to cold. I was walking outside and some cold water infiltrated my shoes.
Second - July 2013: Pain in both hands after having a long walk - some 12 km in the heat. At that time I was also practicing bodybuilding, so I can blame this one on lifting.
Then came the real ones:
Dec. 2016 - Pain in right foot after exposure to cold.
Dec. 2017 - Excruciating pain after exposure to cold. Misdiagnosed as herniated disc.
Dec. 2020 - Pain in all joints. Erythema nodosum because of non-steroidian anti-inflammatory drugs. Misdiagnosed as sarcoidosis.
February 2023 - Right hand went numb. Misdiagnosed as carpal tunnel syndrome.
May 2023 - July 2023 - It was a nightmare one. I had vertigo, nausea, fatigue, bell's palsy on the right side of the face, bowel & bladder problems, hearing problems, optic neuritis on the left eye.
On September I was evaluated by a neurologist who said that I'm at EDSS of 1. They also said (since September) that I have to start treatment with Kesimpta, but they're the ones who also delay and complicate this process.
Now, since September - when I can say that most of my symptoms remitted (excepting the numbness in the right hand which almost disappeared), I started having nerve pain in both legs and arms, spasticity which tends to spread. I also lost some sensation in the left side of the torso.
I don't know what's happening and I'm scared. I took Medrol, even if the neurologist told me not to do so. I think that's stupidity. They don't know what we're dealing with, but they're the ones to argue if you're to take a drug that can relieve pain.
Hello Paul. IT sounds like you’ve been through a lot in the last 12 years. It’s ok to be scared. Fear and worry come and go…but God loves us and will never leave us. I also have experienced icy cold burning hands and feet after exposure to cold or even cool temperatures. Around 15 years ago I was told wrist/hand numbness during sleep was carpal tunnel. I even wore braces to keep hands extended during sleep. But, no major help. I was already dx with MS at that point—so not sure why they thought it was carpal tunnel. Do your hands or feet bruise when you have the severe pain after cold exposure? I hope you can get on disease modifying treatment for preventative care. But relieving pain is also vital and “normal painkillers” don’t typically help. I have found long term help from Lyrica and Cymbalta. But it never takes pain fully away. Strangely enough, the main thing that gives me pain relief is a warm water (93 degrees) therapy exercise pool. Really, a hot shower is also immediately helpful (but doesn’t last). Welcome to this chat-group. You will find great comments here and people who care and understand!
@Criscross21 No, I hadn't experienced bruising, but I experienced excruciating pain in 2017. It's interesting that you're saying about numbness in hands during sleep - I experience a lot of numbness during sleep / after waking up especially in hands. How do you manage it? Thank you very much for answering! :)