I have tried not to look on forums or anything for over a year..
My symptoms started almost 2 years ago with blurred vision and right extremity weakness ( I couldn't hold a pen). I didn't connect the two symptoms at all for quite some time. The opthamologist ordered an MRI and I had trigger point injections in Right shoulder. I never heard anything about MRI and assumed it was normal (my symptoms improved drastically with multiple trigger point injections and I was quite honestly too busy to worry about it ).
Around the same time, I had to go to ER for gastric pains and they were unable to find a cause. The surgeon told me it was a spasm of my intercostal muscles from holding my infant. I didn't connect any of these things and after injections, I was good for 6-8 months. Then, it all hit again. That time it was left sided weakness, severe spasticity in shoulders and neck. I felt like I had been hit by a truck. Severe fatigue and the gastric pains were back along with blurred vision.
My internist sent me to a neurologist who assumed I was psychogenic but ordered an MRI to be nice. That MRI came back with periventricular white matter changes of unknown origin. There were 3-4 and then others in temporal lobe. I went to see a MS specialist and he felt that they weren't "typical" enough to use those alone. However, he found several other spots on the initial MRI from the previous year that was read as normal. He ordered LP, it was negative and my CRP was high so I was referred to rheumatologist.
All of those tests were negative and CRP returned to normal. I was feeling so much better that I put it all on back burner ( I have 5 kids ) . The MS specialist wanted me to follow up and basically said we were waiting on it to declare itself. Another 6-8 months went by and another round of symptoms showed up . This time it was facial numbness bilaterally. It felt like I had a mask dried on my face and then it would burn and have pins and needled.
I returned to specialist who basically said I had developed nystagmus and based on clinical report, he felt MS had declared itself but we would do an MRI and then start meds. I returned 2 weeks later for MRI and it looked better than any of them had. So, he totally changed his tune and recommended we rule out psychogenic causes. He said it was for insurance purposes.
About 2 weeks later, my vision was so messed up that I contacted opthamologist and saw near-opthamologist who diagnosed me with right homonymous hemianopsia and told me he wanted me to follow up with euro immediately. I called them and they basically said to wait until my next appointment. I had moved anyway so I saw a new neurologist a couple of weeks ago. He ordered an MRI , VEP, and LP. I am waiting for the LP. The MRI showed punctate frontal lobe lesions (these were not there in April) and some sort of T2 intensity in anterior temporal lobe ( they are thinking meningioma but I go for CT scan this week).
The result basically said my scan was suggestive of demyelination but not definitive.... My spinal MRI was 100% clear a year ago and now shows multiple "t2 hyper intensities" that the radiologist is saying are likely hemangioma that are presenting atypically. I find it strange that I had 0 one year ago and now have 3 thoracic and 1 cervical hemangiomas.... The VEP was read as borderline.. "not definitive of demyelination unless suggested by MRI" ..
I am at the point of feeling very frustrated. My short term memory is atrocious, vision becomes extremely blurry if I go outside with kids ( we live where it is hot and humid), and I generally just want to know why I fatigue so easily and feel like I have brain fog most of the time. The spasticity in my shoulders and the abdominal (really right at base of xiphoid process more than abdominal) pain comes in waves. I guess I just needed to vent!!!! I am really not wanting to do another LP and it be negative.... just confused...
My symptoms started almost 2 years ago with blurred vision and right extremity weakness ( I couldn't hold a pen). I didn't connect the two symptoms at all for quite some time. The opthamologist ordered an MRI and I had trigger point injections in Right shoulder. I never heard anything about MRI and assumed it was normal (my symptoms improved drastically with multiple trigger point injections and I was quite honestly too busy to worry about it ).
Around the same time, I had to go to ER for gastric pains and they were unable to find a cause. The surgeon told me it was a spasm of my intercostal muscles from holding my infant. I didn't connect any of these things and after injections, I was good for 6-8 months. Then, it all hit again. That time it was left sided weakness, severe spasticity in shoulders and neck. I felt like I had been hit by a truck. Severe fatigue and the gastric pains were back along with blurred vision.
My internist sent me to a neurologist who assumed I was psychogenic but ordered an MRI to be nice. That MRI came back with periventricular white matter changes of unknown origin. There were 3-4 and then others in temporal lobe. I went to see a MS specialist and he felt that they weren't "typical" enough to use those alone. However, he found several other spots on the initial MRI from the previous year that was read as normal. He ordered LP, it was negative and my CRP was high so I was referred to rheumatologist.
All of those tests were negative and CRP returned to normal. I was feeling so much better that I put it all on back burner ( I have 5 kids ) . The MS specialist wanted me to follow up and basically said we were waiting on it to declare itself. Another 6-8 months went by and another round of symptoms showed up . This time it was facial numbness bilaterally. It felt like I had a mask dried on my face and then it would burn and have pins and needled.
I returned to specialist who basically said I had developed nystagmus and based on clinical report, he felt MS had declared itself but we would do an MRI and then start meds. I returned 2 weeks later for MRI and it looked better than any of them had. So, he totally changed his tune and recommended we rule out psychogenic causes. He said it was for insurance purposes.
About 2 weeks later, my vision was so messed up that I contacted opthamologist and saw near-opthamologist who diagnosed me with right homonymous hemianopsia and told me he wanted me to follow up with euro immediately. I called them and they basically said to wait until my next appointment. I had moved anyway so I saw a new neurologist a couple of weeks ago. He ordered an MRI , VEP, and LP. I am waiting for the LP. The MRI showed punctate frontal lobe lesions (these were not there in April) and some sort of T2 intensity in anterior temporal lobe ( they are thinking meningioma but I go for CT scan this week).
The result basically said my scan was suggestive of demyelination but not definitive.... My spinal MRI was 100% clear a year ago and now shows multiple "t2 hyper intensities" that the radiologist is saying are likely hemangioma that are presenting atypically. I find it strange that I had 0 one year ago and now have 3 thoracic and 1 cervical hemangiomas.... The VEP was read as borderline.. "not definitive of demyelination unless suggested by MRI" ..
I am at the point of feeling very frustrated. My short term memory is atrocious, vision becomes extremely blurry if I go outside with kids ( we live where it is hot and humid), and I generally just want to know why I fatigue so easily and feel like I have brain fog most of the time. The spasticity in my shoulders and the abdominal (really right at base of xiphoid process more than abdominal) pain comes in waves. I guess I just needed to vent!!!! I am really not wanting to do another LP and it be negative.... just confused...
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