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.

after struggling with my PCP for weeks, i finally got into a neurologist. i had brain and c-spine MRIs w/ and w/o contrast. the brain results were normal--the neuro said better than normal if that's possible, with no sign of lesions or white matter.
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.

Most of us on here have weird diseases. 95% of the neurologists we try to see have a parameter to meet now that health coverage is so regulated. If you are out of the perscribed boundaries of their books of causes and reactions, most times they can't go futher with you.
I was blessed to find Dr A Douville in Los Gatos Ca., that diagnoses the weird and weirder.
He found one other person in England who has the same thing I have, that makes 2 of us in the world. And medication is hit and try.
Perhaps you are one of 2 in the world, so dont give up on keeping going to different doctors. First you must find a neurologist that says, "yes there is something wrong with you" It validates the fact that you are really feeling like you do. You must research the world internet, just type in "foreign search engines". It is mostly up to you to keep going even when sick, you are your only advocate and noise maker. so just keep on making noise until someone listens and keeps trying on your behalf, make appts every month and ask how they are doing. use ask and google find a medical website, There are 2 many auto-immune diseases so dont use esther C which supports your immune system, use plain C that help fight off illness. Dont take vitamins that fight against you, try V8 juice etc, I take antidepressants, Its disturbing having something that incapacitates you, and you look great. Not sick at all. You must be your own acheiver and Peanut gallery. You must try everything; besides God helps those who help themselves; it even goes for us. We start, He see's we mean business He takes over. And no matter what it is, He shows us the Way.

Hi Binx and welcome to NT.

I'm sorry that you've got so many symptoms and so few answers. I agree with the other posters that you'll have to advocate for yourself to get proper treatment.

I know what's wrong with me, but still find it hard to get the help I need. If you cruise the forum, you'll discover that many of us have found finding a good neurologist rather challenging. If you were willing to tell members roughly where you live or how far you'd be willing to travel, they might be able to suggest good clinicians.

I also have a young daughter so I understand some of your family challenges. I also understand that, for her sake, you can't give up.

Cheers

thank you for taking the time to respond to my post.

i am in the san francisco bay area, so any recommendations for neuros would be most welcome. the one i am seeing came highly recommended by my 2 neurosurgeons, and although the jury is still out on whether he is going to be able to get to the bottom of what's going on with me, it would be good to have some other folks in the wings.

vanthils, i used to live in los gatos, ca and my mom is still in the area. i will look into dr. douville as an option as well.

thank you both so much for your reply.

Binx

Are you drinking enough water... getting enough electrolytes? sounds partially like an ocular migraine. As far as the weakness, could be from dehydration. Did they check if you were anemic? You say your reflexes are overexagerated... hmmm ask the neuro for an emg to rule out nerve/muscle problems.

Not sure, but wondering if the physical therapy that they suggested.

Has something to do with vision.

If so give it a try. I did vision type therapy. And it was very helpful.
What it did was give me back my walking and things like that.

Donna

hi again, and thank you for the additional responses.

Dmom: my physical therapist focused on myofascial release to deal with muscle spams i had in my neck and at the base of my skull. she did work in my upper back as well.

chokato: i drink a TON of water and have been checked now for anemia and B12-related anemia with normal results. there has been mention of migraine, but the duration of my episodes extends beyond what they would normally expect with that diagnosis.

i just don't know what in the world is going on and it's so incredibly difficult to manage life in the midst of all this illness and uncertainty.

thanks for "listening'.

Hi Binx :-)

My MIL went through what you describe you are going through, for years. She had all but lost the ability to walk, but her MRI's were consistently completely clean, etc. They gave her the B12, PT, etc, and still had no idea about what was wrong. She finally went to the Mayo Clinic in Rochester, MN, where a multi-disciplinary team of doctors spent two weeks looking for the answer. They performed a lumbar puncture (?) to test her spinal fluid, and found the markers for MS. They were able to establish that she had had MS for approx. 10 years, based on whatever they analyzed in her spinal fluid.
It might be worth considering for you to go to a major, mulitdisciplinary team-approach diagnostic center. I know that Mayo almost always figures it out before you leave, and you don't need a referral. The other thing is, have they tested your spinal fluid?

Hang in there! The answer will come - it always does. Believe in yourself, and don't give up.

Binx, do you have a copy of the labwork results or do you know the exact B12 level and reference range? Many a patient has been told they have a normal B12 level when it is not. You want to be absolutely sure this isn't a problem, and in fact... you may want to take supplemental B12 for good measure. If you haven't seen the report with your own eyes, request a copy of it.

I had many of the symptoms you mention when I was b12 deficient with a low NORMAL b12 level of 296 (150-1100). I was lucky that my doctor was one that realized a normal B12 level is not always sufficient.
http://jccglutenfree.googlepages.com/b12deficiency
http://jccglutenfree.googlepages.com...ciencysymptoms

However, these symptom do overlap many conditions. Have you been tested for Lyme Disease? Celiac Disease/gluten sensitivity?

Cara

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