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Searching for a diagnosis
Hi everyone. I’m in the process of trying to get diagnosed, and I’m wondering if anyone can relate to the following symptoms:
1) Visual Disturbance: my vision field will suddenly move back and forth horizontally, very rapidly. (My pupils are also different sizes.)
2) Sharp, pin prick type pains in my upper right arm. When they occur, I almost drop whatever I’m holding at the time because it weakens the whole arm.
3) Uncontrollable twitching of the left pinky finger. Again, happens randomly, without warning.
Those are the 3 main things I’m currently dealing with, and each of these have been happening for at least 5 years. (I’m 27 now). In terms of imaging, I had one brain MRI 2.5 years ago. I was told that it was “clean” except for a dilated vein at the base of the pons. I was told I shouldn’t worry about that.
I have an appointment with the same neuro-ophthalmologist I was referred to 2.5 years ago, later this month. I also have an appointment scheduled with a general neurologist a few days after that. Can anyone relate to any of these specific symptoms? I’m getting desperate.
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6 Replies
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Hi Jessy,
There are LOTS of symptoms that can characterize MS. What you describe might indicate MS but they might not.
Eyesight: One of my first symptoms, which occurred shortly before I was diagnosed in 1980, affected my vision. My field of vision narrowed, almost like tunnel vision. It happened once and never again. Other MS patients have continuing vision problems. It’s not uncommon.
Pain: There might be pain and there’s frequently numbness. It can be in hands, feet, legs, even your stomach or face. I’ve had occasional shooting pain in my right arm. It can generate from nerves in your neck (cervical spine).
Twitching: Not in my hands but my legs can jump, the left more than the right, depending on the position of my spine.
About your MRI: A brain MRI isn’t enough. Many of the physical symptoms of MS originate in the spine. They appear as lesions on the MRI but those lesions aren’t always visible. For an MS diagnosis, I’ve always believed an MRI of the brain, cervical spine and lumbar spine is required. Other diagnostic tests include a spinal tap and, since you’ve been having visual problems, a visual evoked response test.
I wouldn’t count on a neuro-opthalmologist to diagnose MS nor a general neurologist. If possible, I’d find a neurologist who specializes in MS.
I’m not a doctor. My information comes from living with this disease nearly 38 years.
Over a year ago I wrote a column about communicating with your doctor. Includes some tips that might help you during your next appointments.
I hope this will help you a bit.
Check back in with us after your medical appointments and let us know how things stand.
Ed
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Hi Ed,
Thanks for your kind response. I’m learning that I need to start advocating for myself a lot more, since none of these things that I’m experiencing are “normal” for someone my age.
I will definitely post an update following my appointments.
-Jessy
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Jessy, all I know is that these occurrences creep up on us and we rarely take any notice of our first signs, nor have reason to piece them together, we just look back on remembering them…The final diagnosing can take quite some time, once our local GP’s rule this out and then that out, as it did for me, well that was until I was taken seriously and sent off to have my first, then second MRI cervical – thoracic spine and brain scan, the second verified after having Gadolinium…
Strange as it may sound but, the day they put a name to it, is a weight off our mind because only then can we stop trying to describe what is happening to us, and for once, we can actually move forwards..
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Hi Jacqueline,
It’s so frustrating to be in a place of uncertainty. 2.5 years ago, I felt like I was finally going to get significant answers. Instead, I got a misdiagnosis. Then, I got pregnant with my daughter, and I’m just now starting to take care of myself again. Hoping for more concrete answers in the weeks and months to come.
-Jessy
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Jessy,
You have the right idea. Being your own advocate is VERY important.
I’m looking forward to hearing more about your journey.
Ed
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All I can say really is…we know our bodies more than any experts, why? because we are living in it…
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