I've been in limbo for over a year now, and I figured I'd finally post. I started having symptoms in June of '14. Went to my primary doctor, who was convinced for a few months it would go away on it's own. When my vision started degrading, the vertigo, fatigue, paresthesias got to the point that they were constant, and my mobility issues were putting me in bed for days I begged him to send me to a neuro.
The first neuro I talked to decided I had MS without even having an exam (what?), and wanted MRI to confirm. MRI came back negative, so he decided I had migraines and sent me on my way. I kept getting worse, and went to another neuro who ordered another MRI, and discovered I had, from what, at least 6 lesions consistent with demyelination (the radiologist only commented on a lack of tumors, no information on hyperintense areas or lesions), and ordered a spinal tap to confirm. When it came back negative, he decided it was not MS, and started checking me for seizures.
When all my EEGs came back normal, I asked him about the lesions again, and now he's saying they're consistent with chronic headaches. I got migraines as a kid, and I have had about 2-3 since this all started, but it was a good 10 years between them. He has no idea what's wrong, but he's sending me to the Mayo clinic (!) to decide if I'm having seizures or demyelination. Now I'm waiting on the insurance to decide if it's medically necessary for me to go to the Mayo clinic, since it's out of area. I'm getting worn out, and worn down.
The longest "spell" I've had was in July, which lasted 6 days. Most of my "spells" have lasted 1-2 days. I'm coming off a 3 day one now. In the one in July, I had to use a shopping cart as a make-shift walker, and my knees were practically still dragging the ground. This last one, I lost the feeling in my right leg, and it would bear no weight. I fell in the kitchen last night, and twice more before I could get back to the bed. I think I spent about a total of about 20 minutes on the floor trying to get up the strength to stand up.
I had to force myself today because of a job interview, or I think I'd still be in bed, afraid of falling like that again. Between spells, the numbness and tingling in my hands and feet, vertigo, and easy fatigue never go away.
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
The first neuro I talked to decided I had MS without even having an exam (what?), and wanted MRI to confirm. MRI came back negative, so he decided I had migraines and sent me on my way. I kept getting worse, and went to another neuro who ordered another MRI, and discovered I had, from what, at least 6 lesions consistent with demyelination (the radiologist only commented on a lack of tumors, no information on hyperintense areas or lesions), and ordered a spinal tap to confirm. When it came back negative, he decided it was not MS, and started checking me for seizures.
When all my EEGs came back normal, I asked him about the lesions again, and now he's saying they're consistent with chronic headaches. I got migraines as a kid, and I have had about 2-3 since this all started, but it was a good 10 years between them. He has no idea what's wrong, but he's sending me to the Mayo clinic (!) to decide if I'm having seizures or demyelination. Now I'm waiting on the insurance to decide if it's medically necessary for me to go to the Mayo clinic, since it's out of area. I'm getting worn out, and worn down.
The longest "spell" I've had was in July, which lasted 6 days. Most of my "spells" have lasted 1-2 days. I'm coming off a 3 day one now. In the one in July, I had to use a shopping cart as a make-shift walker, and my knees were practically still dragging the ground. This last one, I lost the feeling in my right leg, and it would bear no weight. I fell in the kitchen last night, and twice more before I could get back to the bed. I think I spent about a total of about 20 minutes on the floor trying to get up the strength to stand up.
I had to force myself today because of a job interview, or I think I'd still be in bed, afraid of falling like that again. Between spells, the numbness and tingling in my hands and feet, vertigo, and easy fatigue never go away.
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
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