- May 9, 2021
Hi, all. First post here. This is going to be a very long post. I have not been diagnosed, but this has been ongoing for over 10 years. My GP from a long time ago suggested I might have it, but I guess he never referred me and I didn't pursue it (remember being fatigued back then). A few years later, I was shaving my legs and couldn't feel part of my leg when pressing the razor against my leg. It eventually moved up my leg, then to my other leg and both arms. As of last week, my face is completely numb too. My GP maybe 8 or 9 years ago thought I had MS. Went to a neurologist & had an MRI. No brain lesions. The meds the neuro prescribed were worse than my symptoms so after a few visits, I decided I would just live with it. I think I was going through menopause during this time so hot flashes and dizziness could have been from that. I've had fatigue & migraines on and off for the majority of my adult life. Last year I woke up from a nap and my ears felt full. I was also seriously tired all the time and could sleep for days and wake up only to still be tired. I was also having vertigo, tingling in my legs, sound/light sensitivity, constant migraine, fatigue. I went to my GP, but had to see the ARNP who is an idiot & misdiagnosed me, but did refer me to an ENT. I had to wait over a month to see them. Before my appt. I also developed TMJ. The ENT thought I had vestibular migraines and BPPV. Waited another month to see neuro and he confirmed this diagnosis (October 2020). Fast forward to this year, my mom got sick, then died. I've had depression/anxiety for most of my adult life, but it is now at an all time high. So add that in with the constant pain, fatigue, migraines, etc. is just more than any one person should have to endure. In the past few months I have had some visual auras that are pretty weird. I've also had swollen ankle/feet quite a few times recently and have thrown up a few times for no apparent reason and I am a person that rarely throws up. I miss so many days of work, I can't believe they haven't fired me yet. I have constant pain to some degree ALL the time. Migraines, chronic back pain, hips hurt, feet burning, feet very cold, numbness over most of my body, too many things to list and this is getting really long. My doc told me years ago that since it wasn't MS, they would run tests to rule out other conditions that mimic MS. They have run every test in the book and ruled out lymes, lupus and even fibromyalgia. Rheumatologist said it was myofascial pain syndrome which is similar to fibro, but because I didn't have all the tender points at the time of the visit it was ruled out. The rheum appt was several years ago, but I got referred again, but can't get an appt. until August. I can't get treated if I don't have a diagnosis, but it has been a vicious cycle of tests, dr's and specialists spending so much money and never getting anywhere. HELP!!