I've been in limbo -- with probable MS for over 14 years. In 2014, I moved to Louisiana and just gave up. I quit trying to determine what caused all of my symptoms. I was diagnosed with fibromyalgia instead. Once I moved here I got a rheumy and he gave me meds for fibro. They never worked.
One day, I had a flare and a sinus infection. I went to the doctor and he gave me a steroid shot. It was the first time I ever willingly took one in years. I literally walked outside and was way better. Not in the hyper way normal people are, just in the way I was before all this started. As another test, I started taking anti inflammatories during flares. They worked. By this point, I had returned to work and not able to really challenge my diagnosis.
About two years ago, I got a bad eye flare. I went to the eye doctor. He found a lesion in my eye in the nerve. I was sent to a specialist. It never occured to me that it was MS. The specialist looked at my eyes, and asked me about my docs. I told him I had a rheumy and a neurologist. ( I have cognition problems) He told me it's an autoimmune disease-- and to go see my docs-- both of them.
With work I was unable to really do anything. My husband lost his job and I had to return to work. After about a year and a half into my job, I began to have issues driving. I went back to the eye doc. I was having trouble staying within the lane and I thought my vision was getting worse.
I explained how I kept jerking the car and my son told I drove like a drunk. She explained that I have two lesions, one very big. She asked about my doctors. I told her I had a neuro because of the cognition and a rheumy. She asked why I have cognitive issues, I explained about the MS and she said ----
I am sending photos to your neuro, you need to go ASAP. I believe you have MS. I told her my eye doc in Texas always said I did,so now I have three eye docs saying this-- So I make that appointment in the parking lot.
The appointment was for August 15th--2017
Ten days ago, I get an eye flare again-- I struggle with vision and then three days in at the hair dresser my left foot goes numb. I tell myself it went to sleep. That next day I wake up and I can barely walk. My foot is numb from the bottom of my big toe all the way to the tips of my toes. All five. I could only walk by sliding and flopping my foot- and hiking up my hip. Walking took so much effort that it drained me. Driving was difficult, and I could only ride my bike with the back of my foot working the pedal. I was incapable of flexing my toes and upper foot back. So riding in that position tired me so much that more twenty minutes and I was done. ( I usually ride 2 hours when flare free) To be truthful. Cycling saved me. Without the strong butt muscles, I would have been unable to walk as I had to hitch my leg forward from the upper thigh and hip.
Finally after four or so days I looked it up. It was the most classic textbook case of foot drop ever.
Today it's gone. I scheduled an appointment for Friday instead. I have videos of me walking and my doctor has my photo of my lesion-- it's took my body two years to get a new one, but it's a doozy.
I am hopeful this is the end of a really long journey. Fourteen years to be exact. I am so tired,and hopeful I can be put on medicine that will finally help.
( as luck would have it I found one for the cognition that helps tremendously-- by accident I learned that it helps people with MS-- I can talk without hesitation now b/c of this,if you'd like to learn about it let me know)
Peace ya'll.
LBJ
One day, I had a flare and a sinus infection. I went to the doctor and he gave me a steroid shot. It was the first time I ever willingly took one in years. I literally walked outside and was way better. Not in the hyper way normal people are, just in the way I was before all this started. As another test, I started taking anti inflammatories during flares. They worked. By this point, I had returned to work and not able to really challenge my diagnosis.
About two years ago, I got a bad eye flare. I went to the eye doctor. He found a lesion in my eye in the nerve. I was sent to a specialist. It never occured to me that it was MS. The specialist looked at my eyes, and asked me about my docs. I told him I had a rheumy and a neurologist. ( I have cognition problems) He told me it's an autoimmune disease-- and to go see my docs-- both of them.
With work I was unable to really do anything. My husband lost his job and I had to return to work. After about a year and a half into my job, I began to have issues driving. I went back to the eye doc. I was having trouble staying within the lane and I thought my vision was getting worse.
I explained how I kept jerking the car and my son told I drove like a drunk. She explained that I have two lesions, one very big. She asked about my doctors. I told her I had a neuro because of the cognition and a rheumy. She asked why I have cognitive issues, I explained about the MS and she said ----
I am sending photos to your neuro, you need to go ASAP. I believe you have MS. I told her my eye doc in Texas always said I did,so now I have three eye docs saying this-- So I make that appointment in the parking lot.
The appointment was for August 15th--2017
Ten days ago, I get an eye flare again-- I struggle with vision and then three days in at the hair dresser my left foot goes numb. I tell myself it went to sleep. That next day I wake up and I can barely walk. My foot is numb from the bottom of my big toe all the way to the tips of my toes. All five. I could only walk by sliding and flopping my foot- and hiking up my hip. Walking took so much effort that it drained me. Driving was difficult, and I could only ride my bike with the back of my foot working the pedal. I was incapable of flexing my toes and upper foot back. So riding in that position tired me so much that more twenty minutes and I was done. ( I usually ride 2 hours when flare free) To be truthful. Cycling saved me. Without the strong butt muscles, I would have been unable to walk as I had to hitch my leg forward from the upper thigh and hip.
Finally after four or so days I looked it up. It was the most classic textbook case of foot drop ever.
Today it's gone. I scheduled an appointment for Friday instead. I have videos of me walking and my doctor has my photo of my lesion-- it's took my body two years to get a new one, but it's a doozy.
I am hopeful this is the end of a really long journey. Fourteen years to be exact. I am so tired,and hopeful I can be put on medicine that will finally help.
( as luck would have it I found one for the cognition that helps tremendously-- by accident I learned that it helps people with MS-- I can talk without hesitation now b/c of this,if you'd like to learn about it let me know)
Peace ya'll.
LBJ
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