The weekend of April 28 - never forget it. I had been having some double vision and difficulty urinating. Made two appointments; one with eye doctor and one with internist. Thought I needed a new prescription and maybe had a UTI. Eye doctor found esotropia in left eye and referred me to neuro opthalmologist. UTI negative. That Friday night, I was hit with a horrific weakness and severe blurred vision that sent me to the ER. They did a CT scan and it was normal ... they sent me home. I was having a very hard time urinating. Saturday early morning I was able to urinate; symptoms worsened. I went to the ER again, this time going the 60 miles to the ER my primary uses. MRI done; normal...sent home. Had not urinated since early that morning. Sunday back to the ER in my town because I still had not been able to use the bathroom ... was in terrible pain. They catheterized me and got 2 liters of urine from my bladder. By then I was having twitches and muscle cramps/spasms in my feet and calves. The ER doctor immediately thought MS. I was admitted. ANOTHER MRI done ... normal. Symptoms improved over 5 days except I still could not urinate. Sent home with catheter.
Failed many tries at bladder training/urinating. Finally urodynamics was done. Showed neurogenic bladder. Have been taught to self-cath. Neuro-opthalmologist found RAPD optic neuropathy in my RIGHT eye (believes esotropia in left eye is unrelated). Did a test for Devics (NMO), ANA and ACE. All came back normal. In the meantime, "twitching" began again. This is roughly 6 weeks from the April 28 incident. Vision blurred; left eye turned farther in towards nose. Also had three falls. Called neuro-opth. and he had me come back in. He had already referred me to an MS specialist. I have not seen her yet ... will see her on Tuesday. In meantime, brain and orbits MRI done yesterday ... neuro-opth. read them and said normal. Today they do full spine. I have had 3 surgeries and a fusion and need a 4th surgery but Mayo evaluated and said no, too dangerous.
Still having "twitching". Not so bad when I first wake up. Worsens as the day goes on. Also some strange numbness ... bottom of feet under toes. When shaving yesterday, I noticed that as I moved the razor up my left leg, I felt a "zap" in the top of my foot. Numbness on the side of my right hand (down pinky finger, etc.) for about a week. General pain, and fatigue is awful. Also chronic nausea. And chronic thirst, but diabetes was ruled out at Mayo.
Got reports from neurologist in Memphis from 1998. Interesting what you forget. Had seizure problem which was attributed to clotting disorder they discovered called Factor V Leiden. Given Neurontin and Topamax and blood thinner since ... no seizures since 1999. Also had been told I had a stroke when I had lost vision, but in notes it says "bilateral optic neuropathy". Also had forgotten an isolated episode of dystonia ... I remember now horrible cramps. I thought is was low potassium or something. In notes I had also reported difficulty urinating. And doctor noted I could not stay on topic. Also history of migraines.
All of that had resolved until April. Today, vertigo has hit with a vengeance. Nauseatingly swimming/spinning. In top/front of head. I have had some light-headedness since end of April but nothing like this!
So now MRI with contrast in a Tesla 3 is coming back normal. I am either losing my mind or something is wrong that they are missing.
Any help? Ideas?
Thanks so much. I have a 10 year old daughter and husband and they need Mommy back.
Update --- went to MS specialist --- brain MRI showed a lesion but right now she is more concerned with spinal cord compression and need for surgery than she is possible MS. Does she have priorities right?!?