Hi everybody. I’m hoping to gain some helpful advice so that I can advocate for myself better. In 2014 I suffered some significant vision loss in my left eye. I was also experiencing some other symptoms with my muscles and was referred to a neurologist. After significant wait times and numerous scans I saw him in 2016. He noted that I had a lesion on my right frontal lobe and another a high signal lesion on my left optic radiation (specifically stated a patch of demyelination) but stated that brighter of these would cause the visual loss I was experiencing . He said I should prepare myself for an MS diagnosis and they would need to do a further scan and lumbar puncture.
After the next scan I was referred to a different consultant and diagnosed with a tumour on the left optic nerve. I received treatment for this and it is now stable. I never did receive the lumbar puncture and tbh I actually forgot about the lesions until recently going through my notes. However I have been struggling with my own body for the last 10 years. I have constant muscle issues (mostly spasms that affect my arms and back that last weeks) but I have deep pain leg (mostly the left) that is so severe I was sent to hospital to check for a clot) I also have quite a big dip in the calf muscle and I have no idea why that happened. I suffer from restless leg syndrome that no medication helps with anymore. I used to climb mountains and run and participate in martial arts but I had to stop due to the fatigue. I get insane feelings in my legs like popcorn is exploding and I get full body fasciculation’s constantly.
In March of this year I had my first aura. I have now had 29 auras since and I am currently off work because I don’t feel it is safe for me to be driving (I drive between clients) the ophthalmologist has requested another brain scan with contrast so I’m going to assume any old/new lesions will show up on this but is there anything else I should ask for or questions I should ask. I feel hopeless and most issues are put down to aging (46f) thank you for reading this far.
Hi, I’m sorry you’ve been dealing with all of this for so long. That sounds incredibly frustrating, especially when you’ve had symptoms for many years and still don’t feel like you have clear answers.
I’m not a doctor, but given your history of demyelinating lesions, previous discussion about a possible MS diagnosis, ongoing muscle spasms, fatigue, sensory symptoms, and now the increase in visual auras, I think it would be reasonable to ask some questions when you see your specialists.
Some things you might want to ask include:
-
Will the new MRI include both the brain and spinal cord (cervical/thoracic spine), as spinal lesions can sometimes explain leg symptoms and muscle issues?
-
Given the previous mention of demyelination, should a lumbar puncture still be considered?
-
Could your symptoms warrant a review by a neurologist who specialises in MS or neuro-inflammatory conditions?
-
Are there any nerve conduction studies or EMG tests that might help explain the muscle fasciculations, calf muscle changes, and spasms?
-
Could the visual auras be migraine-related, seizure-related, or linked to something else neurologically?
I would also mention the dip in your calf muscle and any progression of weakness, as muscle wasting can sometimes provide important clues.
Most importantly, trust yourself. You know your own body, and it sounds like you’ve experienced significant changes over the last decade that go beyond simply “getting older.” Fatigue severe enough to stop activities you once loved, persistent sensory symptoms, muscle spasms, and new neurological symptoms deserve proper investigation.
It may also help to keep a detailed symptom diary before your appointment, noting:
-
When symptoms started
-
How long they last
-
Any triggers
-
Whether symptoms are worsening or fluctuating
-
Photos/videos of visible fasciculations or muscle changes if possible
Hopefully the upcoming MRI will provide some answers, but don’t be afraid to ask directly why the original lumbar puncture was never completed and whether the possibility of MS or another neurological condition should be revisited.
Wishing you all the best, and I hope you finally get some clarity after such a long journey.