okay so where is House when you need him?
i will write a more detailed post about this soon but for now here is the gist of things.
i had an EEG last week (thursday) in addition to the whole mammogram thang to see about some weird symptoms i had been having. as much as i loathe seeing doctors and having tests, i was quite reluctant to mention these symptoms. really...it was at a friend's urging that i did when i had my annual physical. i was at a friend's house and i was slowing down quite a bit, and staring. prior to my "spells" i feel rather disoriented and just strange. she has kids who have epilepsy so she got concerned about it. i feel i was always present the whole time and so i didn't really worry. but at her constant request (nagging), i mentioned this to my doctor as well as other little symptoms such as seeing a zig zaggy aura on the right side of my face a couple of times. and the fact that there are times i feel what i deem to be little electrical zaps in my head.
so i have this EEG and the whole point of it is to induce a seizure. i thought that i would just hurry up....get this over with and go home. i did not expect anything to happen. i thought at most, maybe i would blank out for a second. that...did not happen. instead, i was writhing and muscles were violently contracting on my right side. needless to say...i was frightened by what my body was doing. i was totally conscious but my right side was in spasms. i had never experienced that before.
the neurologist and my regular doctor were supposed to call with results. neither one did. i continued to experience these spasms each day after. they would come on with me seeing some sparkly flashes in my periphery, a feeling of some type of electrical surge in my head which makes my jaw tense and shudder, and then it goes to my right side only making my arm, my back, and my leg (especially) to tense outward as far as the limb can go and then retract and shudder. the episodes last for about 10-15 minutes and then i feel the aftershocks in my head, face, and jaw where i twitch and jerk.
i had to hunt down my regular doctor and was told through the nurse a three second response of "the results were normal. no seizures. you are fine." of course i was like..."but...i am not fine. i am still experiencing symptoms." i was rushed off the phone with a dismissal of "go talk to your neurologist."
well...that is easier said than done. i remember the day i had lost my balance and coordination and my ability to talk without slurring my speech and was told simply to "stay out of the heat." i have called the damn neurologist and nobody has called me yet.
i am grateful i do not have epilepsy (although my friend tells me that her daughter who does in fact have epilepsy never showed much on those EEGs) but what the heck is going on then? why did i have such a reaction during the test? why am i continuing to have these episodes? what are they? what causes them and how do i stop them or prevent them from happening?
any insights anyone?
where is our resident civilian doctor linda? i would really love to hear anyone's take on this.
15 comments:
LOL to the "resident" doctor comment...not so "LOL" on your experience.
In my minor neurological knowledge, what I DO know is exactly what your friend tells you: not all "seizure" activity is located on an EEG. That said, there are also migraine types that can cause "auras", etc. I'm not as familiar with headaches/migraines causing muscle spasms in the body, however. Migraines CAN cause muscular issues in the face/head though.
What is important to examine is, how much the symptoms are impairing your every-day functioning? If it is just something you "notice", but don't suffer impairment from, it is doubtful the symptom is causing you serious, long term harm or needing immediate attention/treatment. If the symptom is acute and impairing, then you SHOULD by all means continue to hound your neuro for some answers! And if THAT neuro is not responsive, find another...they are a dime a dozen in most metropolitan areas. You deserve a medical team that responds effectively to your needs...it is what you or your insurance PAYS them to do!!!
When was your last MRI? Someone should also be looking for any structural or organic changes in your brain that may have occurred recently as well.
**Disclaimer** I am NOT a physician and only play one on the Internet
Linda D. in Seattle
Is this your first neurologist? If so, now you know why most of us veterans have been through a handful or two.
It's tough finding a doc that actually remembers your name and calls YOU and discusses results and problems.
As far as the "lightening zaps", I experience them. Random hot knife electric stabs in the head. They suck. Along with the visual disturbances you mentioned,and the spasms it sounds like your nerves are having a hard time connecting.zap zap...short circuits. Could be from the heat, exertion, or stress...aggravating the condition. MS is such a roller coaster of a disease. IT doesn't seem to need a rhyme or reason to go blinky.
When was your last MRI? It could be new disease activity or an old lesion that's pissed off at the summer heat. Be persistent...call your docs..ask for explanations.They work for you after all.
Are you taking any meds to control symptoms? There are a few that I have found that keep me functioning for the most part with fewer episodes.
I know it's scary when you experience some of these things for the first time, especially without good explanation. So stress comes into the picture and just makes things worse.
My mantra is :Balance. It's tricky.
Take care..email me.
thanks guys for coming by to give your take on this. i found out today that the neurologist wasn't even aware that i had an EEG. that is just great. i love the communication. the neuro who read my report is actually on the team of my neurologist. very reassuring.
I hope you get some answers soon. I love (not) the medical community's ability to disappear on you when you really need them.
Maybe search complicated migraines? That was an early dx pre-MS. There are some weird migraines out there that do present with auras that do some weird stuff.
Weebs
Get a second opinion. Or maybe you should consider another doctor team that is more responsive to your needs. Don't you live in that state with all the research universities?
I'm no doctor, but I do believe that a patient's state-of-mind can positively (and negatively) affect medical conditions. The ideal doctor is one with both skills and compassion.
I'm not a doctor either, however, my mother has MS also and she experienced exactly what you described. It's like an exacerbation due to heat. 20+ years later, she still has these episodes. I'm thinking it is all MS related.
TMJ (Keep in mind my last guess was wrong, but you left out a few details.) TMJ Google it. Plus, have you ever been tested for fibromyalgia? Go to a Rhumey, NOT a neuro for that DX. The Diane has spoken.
Keep asking until you get some satifactory answers. If you don't fight for yourself no one else will. Being brushed off by the nurse is no answer.
When I was a youth and suffered from chronic back pain I had a doctor ask my mother if i was a chronic complainer in front of me.
I went through several doctors.
An orthopaedic surgeon eventually discovered I had a stress fracture in my back doe to one leg being longer than the other.
Good luck with it.
Very strange and scary thing you are going through of which I never have experienced.
I do think you need to seek another opinion since your last one was so dismissive.
Hey Mere,
I'm starting to think that the idea of getting a second opinion is not a bad one. When I was first sent to a neurologist my PCP gave me a list of clinics that she recommended. It was up to me to get an appointment so I went with the earliest available.
The doc I got was actually a seizure specialist (remember nobody was saying MS yet) which I didn't know at the time. When I attended those newly-diagnosed meetings and had questions and concerns, the MS nurse gently suggested that a 2nd opinion would not be a bad idea. Anyway, I should certainly get under the care of the MS specialist at the very same clinic. So I did, no problems.
I did a quick search in your area and there is a MS Center as part of the [name of large town] Neurology Associates. They do alot of clinical trials there as well.
You've got same great words of input, especially the ones that express similar experiences. It's true that some of the symptomatic meds really do make a big difference in quality of life. At least that's true for me.
Good luck, girl.
those do not sound like 'typical' results, the on-going spasms....
i'd demand to see the neurologist... if not, i'd head for the best emergency department within easy reach!
hope they find some way to help!
I'm with Bernie ... get a second opinion and make sure you have a team that is in sync regarding your medical care. And, whatever you do, please trust your instincts! The physicians may be experts in their fields of specialty, but you are the expert on your body!
I do hope you get this straightened around soon. A hug for you, and that is the only therapy I can give.
Get a second opinion. It cannot hurt.
My DBSA group actually meets in the hospital that inspired House-well the guy who came up with the show.
i will tell him to email you next time I see him.....
(drool).
I am with the troops, get a second opinion. That sounds scary. I hope you are not in pain and that you feel better soon.
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