For ten years I have suffered the impairment of what I was simply told was Interstitial Cystitis. But recently it started getting much worse...after treatment for IC, when I should have been managing better. It was hard to go when I sat on the toilet, even though I felt as if I was about to burst. It was like something just was not wired right. The stream was weak, even with a full bladder. Like it just was not told how much was in there. The frequency made it difficult to live life.. but I kept trying. Within the last couple of years other symptoms appeared... that I wrote off as several harmless excuses. My hands would fall asleep, tingle and go numb every night. My body would jerk throughout the night, and I had horrible night sweats, my muscles would twitch and dance all over my body. I had pain in every joint..this, was longer than two years.. more like the past 5 years. My bones hurt.
I did not start worrying too much, until the "IC" got worse...and then especially one super frightening event happened. Since I pee all throughout the night, it was no surprise to get up at 5 am and shuffle to the restroom feeling like I was about to explode...but as I sat down, I realized I couldn't go at all. Everything tingled and as I looked around I noticed I did not feel well, in a way I had never felt before, either. Things looked weird.. and I felt fluish. Then, this intense fire, icy-hot lava sensation filled up my back.. under the skin. It burned clear through to my other extremities and I stood up in a panic, to wake my boyfriend. But as I walked from one room to another, I noticed I had lost my coordination. Not only that, when I tried to move my body.. it wasn't working barely at all. Paralysis had somewhat set in. I didn't take the time to look at what sides or how much was affected... the panic or a new symptom had me not breathing. I thought I'm having a stroke! I'm dying ! And a bunch of other scary things as I made my way to the bedroom. The fire was still burning within me, as I said "call 911!" I could not explain, I just threw myself on the bed with this nauseous, exhausted feeling. I told him to put my pants on because I didn't want to see my body not working.
The ambulance took me away...by then the fire feeling stopped.. and everything else. I was left with a headache and a general pukey exhausted feeling. I was so tired for what had just happened.. .any other time my anxiety would have kept me as alert as could be. I couldn't have the lights on at the hospital... and the doctors looked over my perfect blood work and scratched their Head. I had no temp..and my oxygen was fine. The fire ice sensation happened once more there.. but diminished within one minute with no other symptoms that I noticed...but I was laying down and not moving. I was sent home with "flu" papers.
A friend called me when I got home and said,"ya know...with all your bladder problems you should get checked for MS now. I see others have experienced a burning sensation."
Of course I Googled it...and was dismayed with how similar the urine symptoms were to mine...and to IC. I have been forgetful.. but I have a lot going on, so I'm not going to say that's a symptom when it could be just me.
My mother has lesions in her spine...first they told her MS and now she is saying they think it's Parkinsons. If the first diagnosis was accurate, that's even scarier for me. I'm calling a neurologist asap. But I would love for people to chime in. I'm a scared to death 33 yr old single mother." IC "if it's that.. ruined my whole quality of life. I just cannot imagine living with the bladder symptoms I have, and now losing movement and being on fire. I need help.