Not new to pain, but new to Shift.ms.
Hello everyone,
I have had pain, vertigo, migraines, and general clumsiness that has come and gone since I was about 15 years old. I have had constant (but usually bearable) tinnitus for the last ten years. I never really put too much though into why I had these things until last year.
In March of 2020, days before we got news that COVID-19 was serious and being labeled a pandemic, the usual pain and clumsiness came back. I assumed that it would go away in a few days like it usually does, and kept pushing through it. It did not go away. Not only that, but my balance became significantly worse, the pains spread to other areas, and I began to experience tingling and numbness in my legs.
I was a very active person before this came on. I was a runner, and would run five miles three times a week for my exercise. After two weeks of the symptoms, I decided that getting on the treadmill might help alleviate the pain (I had stopped running because I was afraid it would hurt more). As I ran, my legs were in horrible pain, but I kept pushing. Around mile one they began to go numb from the feet all the way up to my waist, but they were still moving, so I kept going. Before mile two, I had to stop because I still couldn't feel my legs and was worried. When I stopped running, my legs completely went out from underneath me. They slowly came back over the next half hour. This happened again but in less than half a mile. So I quit running completely.
I then began having blurry vision - as if I were trying to see through soapy water. I found myself heavily fatigued, and yet unable to get good sleep at night. I began having the sensation of burning in my left foot, that would creep up my leg. My muscles and joints would throb and ache. I began to lose strength in my extremities. I found it difficult to find words, and began to stutter a bit. The tingling and numbness showed up in my hands, arms, and face. I have muscle spasms constantly in nearly every muscle of my body, and my balance has become much worse.
My doctor at the time got to work trying to figure it out. She ordered every test and exam she could think of. She ruled out Lyme, RA, lupus, thyroid issues, diabetes, epilepsy, and sarcoidosis. I got an MRI of the brain. It showed two small lesions, but nobody seemed to care about them (including the first neurologist I saw). I had hit a dead end.
My symptoms continued to get worse. I have a feeling that my body is vibrating from the inside, and tremors in both hands. All of my symptoms are severely exacerbated by heat, and any activity that makes body temperature rise.
I apologize for such a long post. I have a year of pain and frustration, and while I have a good support system I do not have any people who understand what I am experiencing to talk to. I appreciate any thoughts, and advice on how to get my doctor to take me seriously and work with me to figure out what is happening.
--Kim
Hi Kim Have you just had an MRI of your head? Everyone has lesions on the brain so it’s quite easy for people to write off. I’m only asking as I was diagnosed by an MRI on my back that showed a large amount of lesions which then made them MRI my back, neck and head with contrast. I would suggest trying to find a doctor that takes your symptoms seriously. I struggled a lot with this at the start and it caused me to be misdiagnosed then one day I found one that even noticed things I didn’t notice about myself. I had a diagnosis in a matter of 3 days
Hi Amy, I have recently had MRIs of the spine. I had to insist on them. I have a copy of the scans, but of course I have no clue what I'm looking at abnormality/lesion wise. Nobody ever went over the scans with me. My doctor just said he thought it looked "fine". All my MRIs have been with and without contrast. I just feel defeated because, the first doctor was trying to help before she got PCSed to a new post. Then her replacement just doesn't seem interested in even attempting to figure it out. Funny how different things can be from one doctor to the next. I'm glad you found someone to listen. That's fantastic! :)