Originally Posted by binx

hello

i'm 41 and experienced relatively excellent health for most of my life. nearly nine months ago, i felt a sharp pain at the base of my skull on the left side of my head and then felt a bit light-headed afterward for an hour or so with some residual headache pain.
for about 10 days after, i experienced a fairly persistent headache in the same spot at the base of my skull on the left side with tingling and numbness which rotated around different parts of my head and face, sometimes leaving sore spots on my scalp which would fade away pretty quickly.

i also became more and more light-headed and experienced muscle weakness in my arms and legs and intense fatigue as the days passed. my vision was also intermittently affected--things seemed blurred and i was having a lot of trouble concentrating; and when i would look at lights, they would sort of dim and brighten. at times, my upper right eyelid would twitch for hours, then my headache would return periodically, and i experience numbness and and some muscle twitching in my left arm and leg.

my vision is still not right with periodic flashes in my peripheral vision and a sort of waviness when i stare at something with a busy pattern. i went to the ER one particularly scary evening and had a cat scan which came back normal, and my blood work only revealed a pronounced vitamin D deficiency which was treated with a 50,000iu megadose that i took weekly over the course of 3 months. (now i take 1000iu daily.) my reflexes are pretty exaggerated and examination of my eyes revealed no abnormalities in spite of my visual changes.

the c-spine was also negative for MS, but revealed cervical spondylosis, degenerative disc disease and bulges at c3-4, c4-5, and a herniation at c5-6.
the neuro felt this was the cause of all my symptoms, referred me to PT and sent me on my way. i self-referred to a couple of neurosurgeons who acknowledge that i need to have a discectomy based on my MRI, but did not feel my other symptoms were related to my c-spine issues. this conflicting information has been very confusing for me.

6 months later, i am still struggling with many of the same symptoms, including the fatigue. i am also getting more pronounced weakness in my ankles. i have good and bad days, but mostly bad at this point. i went back to the neurologist yesterday who is running B12, MMA and thyroid tests (i expect results tomorrow), and he also wants to send me to a sleep clinic.

i am scared, exhausted and overwhelmed. i have a 4-year-old daughter who needs her mama and i have been unable to work for this entire year which is decimating us financially. i was turned down for social security, but am appealing. my husband is overworked and exhausted from having to be both mama and papa to our daughter and to me. i have been put on buspar by my therapist to help me cope with the anxiety i am experiencing on a daily basis.

has anyone else experienced any of these symptoms and found solutions? i am desperate to figure out what's wrong and start to treat it rather than just laying around my house waiting for the other shoe to drop.

Originally Posted by binx

thanks, cara and linn, for your responses. i really appreciate your taking the time to share your experiences with me.

cara: you know, you're the reason i had my b12 level checked. i found your story online about a month ago and it sounded so much like my situation, and it gave me hope for a solution. needless to say, i was pretty disappointed when i got the results that my b12 level was 900. i cried my eyes out.

after thinking about it more, i realized i wasn't fasting, and my dr. said that didn't make a difference; however, after doing additional research, i found out that it might. i have been taking 5000 mg of b12 here and there, but i think i will try to take it more regularly. some days it seems like it makes me feel better, but i don't know if it's a placebo effect or not. my MMA result was 153 with the range being 87-318. i don't know really know what that means since my dr. said my results were normal and haven't found much information about it online.

i have not been checked for lyme disease or celiac disease/gluten sensitivity. i was actually planning on discussing lyme with my neurologist during our next appointment, but what kind of doctor would i see to have gluten sensitivity identified?

linn: since posting the first time, i recently had a visual evoked potentials test to further rule out MS. my results were normal and now my neurologist says MS is off his radar. if i don't get any resolution soon, i just may look into going to the mayo clinic. i looked at their web site and they take my insurance, so there really isn't any reason not to pursue it.

thank you again,
binx

Originally Posted by binx

i appreciate everyone's replies so much. it helps with the sense of isolation that has become so overwhelming to me.

tinglytoes: i appreciate your insight into some of the more profound aspects of dealing with illness. i have indeed located a counselor who is very focused on mindfulness and has been helping me to cope with what's going on in my life. i had to find someone since, as you indicated, my husband has been on the receiving end of so much of my stress, on top of dealing with his own concerns about me. as supportive and wonderful as he is, it was critical that i have another outlet to spare him. you have a very wonderful outlook, and i think it is important to maintain that to survive. i am also scheduled to meet with a nutritional specialist next week who can hopefully give me some feedback as to modify my diet to better cope with my physical symptoms as well. it can only help at this point.

pabb: i agree--it does seem like my symptoms presented as a result of an injury of some kind, but the only thing i had done up to that point was care for my then 3-year-old. in addition to the brain and c-spine MRIs, i also had a CT scan and later an MRA to check for cranial vascular abnormalities as well. everything has come back normal with the exception of my cervical disc bulges and herniation. after doing a bit more research, i do have many of the symptoms of chiari malformation. in fact, that is the only diagnosis that actually seems to fit. i have seen 3 neurosurgeons and a neurologist--in your opinion, is it possible that all of them along with the radiologist who interpreted my scans missed it? if so, i will try to find another dr. who is a chiari specialist as you suggested.

thanks again.

it's a relief to have found this forum.