Shaky alternative dx, lesions, eye issues, fearing MS.
Posted: Wed Apr 30, 2014 5:33 am
First of all congratulations for the forum, a true wealth of information!
My story is this: I was diagnosed in January with suspected Guillain Barré/Miller Fisher syndrome (https://en.wikipedia.org/wiki/Guillain–Barré_syndrome) and hospitalised for five days. The diagnosis was always a bit shaky as my nerve conduction study was normal and I didn't have elevated protein in my CSF (two of the main criteria for diagnosis), but they found an antibody that supposedly correlates with MFS. My symptoms at the time were numbness in my hands and feet that ascended towards by head, followed by numbness in my face, lips, gums, some loss of sense of smell, dizziness and weakness. I was told that my brain MRI was "fine" but never had access to the detailed results. Other lab results were ok, b12 was 284 (low-ish but normal I believe?).
The vision in my right eye was slightly affected - I saw colours as slightly more saturated and had issues with depth perception - but I didn't give it much thought at the beginning, until about 6 weeks ago when I started to see translucid then black spots, flashing lights and peripheral vertical lines. My vision was generally "disturbed" and I sometimes saw straight lines as "flowing". This was followed by strong headaches and pain in the back of my neck and episodes of numbness down my right side. There is some eye pain but I have trouble differentiating it from the headaches. I was readmitted to hospital where they did told me I was suffering from migraine with aura (without doing any kind of eye test or examination) and did another brain MRI I was yet again told was "fine".
I opened the detailed results of the tests on the bus home and read that I had two small t2 brain lesions that were coherent with an inflammatory disorder of the central nervous system - one was periventricular, the other I can't remember where exactly but I later read on the internet that the positioning of the two was characteristic of MS. In the report it was written that the MRI was identical to the one done in January with no evolution. I have no idea why the hospital neuros told me my MRIs were fine when it was blatantly not true.
I had never had a migraine before, and neither has anyone in my family. Triptans had no effect. My doctor is concerned and wants a second opinion.
GBS/MFS is supposed to peak after one to two months and then get improve (supposedly, though people can suffer from residuals and relapses from what I've read) while my symptoms have continued to evolve, with new ones appearing. In the last month these have included:
- headaches, mostly on right side of the head, occasionally top of head, sometimes whole head
- inconstant numbness down right side of body including face
- pain in back of neck
- nerve pain in fingers and toes
- numbness in face (mainly lips) returns, but not as severely as in January, comes and goes
- back pain (sometimes feeling like neck pain radiating down)
- vision issues in the right eye (black spots, flashes, vertical lines in peripheral vision)
- breathing problems (difficulty breathing in) but not severe
- occasional “tight throat” feeling
- inconstant and fleeting loss of sense of smell
- slight problems swallowing
- some recent issues in the left eye as well
A lot of these seem to come on all at the same time, usually in the evening, though the eye issues are constant. The headaches seem to be improving in intensity but they are still there.
I am wondering if the hospital neuros are simply refusing to deviate from their initial diagnosis and accept that they may have been wrong. They say the "migraines" have no link with the previous dx and are due to stress, as are all the other symptoms - a bit lazy, I think! I am concerned that the eye issues may be optic neuritis, which I believe along with the brain lesions would lead to a diagnosis of MS.
I am scheduled to see another neuro at the end of the month but would greatly appreciate any insight in the meantime, as I am increasingly worried about all this.
Best of luck to all of you and keep up the great work!
Marie
My story is this: I was diagnosed in January with suspected Guillain Barré/Miller Fisher syndrome (https://en.wikipedia.org/wiki/Guillain–Barré_syndrome) and hospitalised for five days. The diagnosis was always a bit shaky as my nerve conduction study was normal and I didn't have elevated protein in my CSF (two of the main criteria for diagnosis), but they found an antibody that supposedly correlates with MFS. My symptoms at the time were numbness in my hands and feet that ascended towards by head, followed by numbness in my face, lips, gums, some loss of sense of smell, dizziness and weakness. I was told that my brain MRI was "fine" but never had access to the detailed results. Other lab results were ok, b12 was 284 (low-ish but normal I believe?).
The vision in my right eye was slightly affected - I saw colours as slightly more saturated and had issues with depth perception - but I didn't give it much thought at the beginning, until about 6 weeks ago when I started to see translucid then black spots, flashing lights and peripheral vertical lines. My vision was generally "disturbed" and I sometimes saw straight lines as "flowing". This was followed by strong headaches and pain in the back of my neck and episodes of numbness down my right side. There is some eye pain but I have trouble differentiating it from the headaches. I was readmitted to hospital where they did told me I was suffering from migraine with aura (without doing any kind of eye test or examination) and did another brain MRI I was yet again told was "fine".
I opened the detailed results of the tests on the bus home and read that I had two small t2 brain lesions that were coherent with an inflammatory disorder of the central nervous system - one was periventricular, the other I can't remember where exactly but I later read on the internet that the positioning of the two was characteristic of MS. In the report it was written that the MRI was identical to the one done in January with no evolution. I have no idea why the hospital neuros told me my MRIs were fine when it was blatantly not true.
I had never had a migraine before, and neither has anyone in my family. Triptans had no effect. My doctor is concerned and wants a second opinion.
GBS/MFS is supposed to peak after one to two months and then get improve (supposedly, though people can suffer from residuals and relapses from what I've read) while my symptoms have continued to evolve, with new ones appearing. In the last month these have included:
- headaches, mostly on right side of the head, occasionally top of head, sometimes whole head
- inconstant numbness down right side of body including face
- pain in back of neck
- nerve pain in fingers and toes
- numbness in face (mainly lips) returns, but not as severely as in January, comes and goes
- back pain (sometimes feeling like neck pain radiating down)
- vision issues in the right eye (black spots, flashes, vertical lines in peripheral vision)
- breathing problems (difficulty breathing in) but not severe
- occasional “tight throat” feeling
- inconstant and fleeting loss of sense of smell
- slight problems swallowing
- some recent issues in the left eye as well
A lot of these seem to come on all at the same time, usually in the evening, though the eye issues are constant. The headaches seem to be improving in intensity but they are still there.
I am wondering if the hospital neuros are simply refusing to deviate from their initial diagnosis and accept that they may have been wrong. They say the "migraines" have no link with the previous dx and are due to stress, as are all the other symptoms - a bit lazy, I think! I am concerned that the eye issues may be optic neuritis, which I believe along with the brain lesions would lead to a diagnosis of MS.
I am scheduled to see another neuro at the end of the month but would greatly appreciate any insight in the meantime, as I am increasingly worried about all this.
Best of luck to all of you and keep up the great work!
Marie
I have been taking a b12 supplement just in case, but I will take to the neurologist about trying a more intensive treatment. I've also started supplementing with magnesium and alpha-lipoic acid.