Hi everyone, I'm new to This is MS. I am a 27 yo woman from the southwest. The jury is out on what is wrong with me.
I started with paresthesia and spasticity in the legs when I was about 2-3 yo which has confused the drs immensely. I suffered all through my childhood and told it was "growing pains". The paresthesia and spasticity spread to my arms in my late teens. And then my torso started spasming in my early 20s, giving me breathing difficulties and frequent diarrhea. It took me 3 yrs of daily work to learn to ride a bike (no longer can do that) and I have never been able to master driving.
I go through periods where it isn't that bad and then relapse with extreme spasticity (loosing complete ability to move a leg sometimes), fatigue, slightly blurred vision/pain, etc. I am extremely sensitive to loud noise, vibrations, and occasionally loose my sense of smell. I have just had my first seizures. Everything becomes a lot worse in the heat or if I take too warm a shower. Relapses are coming every 18mo - 2 yrs and last 3-6 mo and seriously hinder my ability to work/finish my education.
I come from an extremely poor family, we rarely had insurance/could afford a doctor and when we could no doctor would listen. At 23 I got a job with good pay/insurance/hsa and managed to get a referral to a neurologist. He sadly said "I wish I would have seen you 20 yrs ago..." Blood work, emg, eeg, brain/cervical mri (no dye), genetic testing showed nothing. But on examination I have babinski's sign, romberg's sign, L'hermittes sign, spasticity in all 4 limbs, hyperreflexia, and an abnormal gait. Frankly I was relieved when he said it wasnt "all in my head" and yes I had an actual serious non-psychological problem.
A lot of diseases have been hypothesized but everything comes back negative and everyone just feels like it is a very rare childhood onset MS but are unwilling to make a diagnosis. My GP, neurologist and neuro-muscular researcher hadn't wanted to prescribe treatment until something definitive came back. Spasticity got so bad though we did a course of high dose steroids and just started baclofen. I am just starting to move again.
I have decided to act like I have MS. My family and doctors think I have it but the early age of onset and the negative tests are so frustrating and confusing. Tests rarely show anything for people in my family though. We've had people in stage 3 or 4 of cancer or other advanced diseases and all scans/tests/bloodwork comes back normal. My mother and maternal aunt also have symptoms of MS, we have had 2 other MS cases in the family, a case of ALS and 2 Parkinsons. Nobody, including the 2 diagnosed MS cases, had a positive test result.
I truly wish I had an actual diagnosis. Nobody takes it seriously that I can't walk far to a car, drive, hike, dance, get in a spa/sauna, handle loud concerts, etc. On a good day I can go for a walk and go to a movie, but never on a bad day.