A Neverending Rollercoaster

Hello everyone,

I have been suspecting having an autoimmune disorder for an extended period of time, most of my symptoms are connected to my big suspicions: fibromylgia, and rheumatoid arthritis. It was not until this week that I had started receiving signs that MS may be on the horizon.

I am 23 and have knee, hands, and hip pain for standing or walking longer than 20 minutes and my hands have really good days and really bad days. I have had coming and going of my arms being overly sensitive to touch that has been going on for several years with no realizing that was not normal until semi-recently.

Another notable thing is that I have aquagenic pruritus and have been battling it at least since puberty, maybe even since I was a kid considering my avoidance of bathing has been throughout my life. I only recently got to the point where I might have that under control.

But the thing that has completely thrown my world around was what happened this week.

On Wednesday, June 5th at 2am, I woke up with my forearms having a burning sensation, I tried for an hour to get comfortable with no luck thinking I just slept on it wrong. It didn’t go away, when I sat up, I noticed my calves had the same sensation. In Canada there is a line you can call to speak with a nurse to advise you what your next course of action should be in response to your symptoms. They decided that it was not something that needed to be seen at the hospital, and recommended I follow up with my primary care or walk-in.

My primary has a walk-in clinic so I am able to come in and speak with him the next day luckily, and he dismisses it as nerve compression or cubital tunnel syndrome. He said to keep an eye on it and return if it doesn’t go away or comes back. I left feeling like I thought I understood.

That night at 12am, June 6th, the right side of my face goes numb. No sagging, no drooping, just a numb feeling as if someone put my face to sleep for dentistry. I start getting really nervous, I get advised to go to the ER by the nurse line.

The doctor does an MRI, blood tests, and tells me that my doctor is basically an idiot to think that I could have not just 4 nerve compressions at the same time, but for thinking it was nerves at all because that would cause the sensation to be throughout my arms and it is only from my elbows to my wrist and knees to my feet for the burning sensation.

The MRI comes clean, they advise me to get referred to a neurologist. Luckily in that front, I may still be referred to a neurologist I met for migraines a year ago. Worst case scenario is I am dealing with this for a fucking year until I am able to see a neurologist.

This continues throughout June 6th, and June 7th, and tonight, I feel me losing feeling in my left cheek. The burning sensation in my right left arm has spreaded upward and I have hyper sensitivity on that arm as well.

I feel completely hopeless. I feel like no one can help me, and the doctors are dismissive. Its tragic that the ones that do seem to care the most are sadly ER doctors, who can’t do much more than make sure I’m not dying basically.

I just started a new job, I’m still in training and will be for the next week and not to mention I will be transitioning to a different job shortly after this because I was offered my dream job during training and am waiting on criminal record check before I can sign the offer letter.

I’m really scared, I don’t even know if I can get this looked at properly. I was so excited to finally have my life being stable and this is here, staring at me and ripping away what little stability I just started getting.

You certainly are having a difficult and uncertain time. I very much hope that things become a little clearer when you see the neurologist