SOS !! I Need HELP ASAP / Info on Neuro. probs/FOG!!

Discussion in 'Fibromyalgia Main Forum' started by orachel, Sep 20, 2005.

  1. orachel

    orachel New Member

    EVERYONE, IF YOU CAN....

    PLEASE PLEASE HELP WITH THIS. fLIPPING OUT, BIGTIME and need as much info advice as possible in shortest amt of time...Sorry so long, wanted to give all essential info.

    ***pls keep bumping as this is semi emergency sitiuatin.

    I sent out crazy help post last night at 2 in morning bc I was desperate...and of course that's the one post since I've been here that got lost (just didn't register to site!)

    Typing, spelling really hard now, so here goes...

    Basic history in profile...FM symptoms started with a bang 3 mos ago. My symptoms have been severe and only worstening in pain/fatigue (not to imply hat anybodys are not). Have really only had "all flare" no non flare for 3 mos. Brain fog hit mildly about a month ago, and has been inconven, distressing even, but I'd read abt that so wasn't too worried. Within last 5 days it has gottn immeasurably worse. In last 3 days,(ironically nuff, energy level and pain better for 1st time since diagnosis in the last 2! lol) I've really been paying attentiona s some very weird stuff is going on. My head is "flipping" or inverting things like crazy...3 x now, been driving, see red light, realizein brain that it is red...but somehow red gets flipped to mean "go" and I've gone straught thru 1 lite, and barely stopped for 2 (whew!!!). Also, flipping words for similar items, like will say kitchen when mean bathroom...think bathroom, say kitchen, and hear immediately my mistagk. Also crazy nuts OVERDRIVE forgetfulness like today ran into discount store to pick up few things....had a "crash " hwere had to rest in store chair for while. Went out to car aft paying (thank god remembered that.) and realized had bags, wallet, cell phone but no keys. Flipped, think must have lockedkeys in car. Start to call husband to let him know needs to get AAA. Can't remember husbands ceelll! Don't know why but hoping for best I tried car door, which wasn't just unlocked but AJAR!! Also purse (didn't take into store, just essentials) and bag of all meds I had with me for doc appt left in full view on seat!!! Thank goodness noone robbed me blind, but would almost have preferred that totally losing my mind power.

    Going thru lights even when focusing hard as can and putting myself at risk (and other ppl..that;s even worse!) isn't an option. This means I can't drive right now, clearly. But really nutty brain fog to the point of flipping every single letter? That doesn't sound normal and it really doesn't feel right. I'm a smart cookie, and had to (beg!) for help filling out a v simple form at docs office bc couldn't decipher birth date from days date!!!

    Seems to be weird combination of instant dyslexia on crack and some weird aphasia (is that the word, stroke victims often have to relearn things?) type thing.

    This is not simple absentmindedness or distractedness or even mildy (or majorly) concerning brain fog....I'm freaking that there is something reeeeaaaaalllly wrong here. I know my body and does not feel right at all in brain areea.

    Ya'll know my crazy long posts...usually whip them out in few minutes...very fast typer and "compose" what I'm gonna say as I write (which may explain some weirdness! LOL).

    Its taken me abt 1 hr so far to write this as have to plan, confirm, think abt each individual ltr, and then fingers still hitting wrong keys.

    Ladies and Gentlemen...I'm scared to death here. Rea;lly trying not to flip totally (and breathing in lavender to calm me down without meds like mad), but scared.

    Doc ordered written neuro exam/sleep studly this past monday, but will be a while to schedule. This clearly cannot wait, rithg? So I'm gonna call my doc asap and tell him I need paper testing and what else?????

    Is it a cat scan, mri, what that I really need to know theres not something major going on up there. And I REALLY need to knnow that!!!! cAN'T read, spell write anything at all in anywhere near my normal way. The sheer deliberation requird to do this is utterly exhausting, and results still pitiful, but still abl to form complex thoughts!

    AND MOST IMPORTANT....What are the possibilities, here? My research into dd just didn'yt get here yet, so I really don't have any idea, and just can;t look into it right now (clearly).

    Are ministrokes a possibility and should IU call cab for er ritht now? Didn't b/c of difficulty even expl med history till now to get er doc to order tests would take as long as waiting for my doc so can call him at 9am. Plus expense and hassle of er alone (husb at work!...Scary stuff alone!).

    I just need to know each and every possibility ya';ll are familiar with that this could be. Brain fog I was willing to buy whn it was putting coffeepot into fridge stuff. Thgis is major disruption in short term and long term memory seems like!!!! And CRAZY part still 2 come...over last 3 days or so when this has been gettting reeeeallllly bad (though today the worst by far!!!), I've been getting hit with these great large IDEA BOMBS.....crazy almost manic weirdo inspiration, manic talking (picture the most talkative person you know, then add lots of speed...constantly)! This was really cool to a point, some good ideas har har, but became disturbing as realized not only some weird usually unused part of brain kicked into overdrive, but some really necessary parts turned off!!!!

    HELP!
    I reallly think somehwo weather due to something like stroke thing or something I don't even know about, I'm having some sort of neuro crisis here

    ......what possiblities are likely with FM?????

    PLEASE SEND ANY THOUGHTS YOU MIGHT HAVE, IDEAS OF WHAT THIS COULD BE (AND POSSIBLY PRAYERS!) AS JUST CAME TO TERMS WITH BODY FALLING APART AT 30....OK...THAT'S ONE THING. WORKING HARD TO FIX THAT...mIND ALTERED PERMANANTLY THIS WAY IS SOMETHING I DON'T KNOW IF I COULD DEAL WITH IN ANY WAY SHAPE OR FORM. tHANKS!

    Last, seemst to come and go a tiny bit...was not nearly this bad last evening, even responded briefly to some posts. But tried to write post to CKK three sdparate times and just couldn't get it out right. Then this is even worse, and has been this way since abt 9 Eastern US time last night .

    Didn't take any of my night meds last night, or morning meds this mornig due to worry about depressing nervs system further, possibly making worse, etc.

    REALLY SORRY IF THIS SCARY FRO ANY OF YOU WHO KNOW ME WELL (THIS IS SO NOT TYPICAL OF MY ABILITYESK TO WRITE), BUT DIDN'T KNOW HOW ELSE TO GET INFO.

    And I know this is hard to read. sorry. typed and retyped each flippin'word like 3 times to get this out!!! And now typing this has taken almost 2 hrs! And then did 3 edits w\/ brain and here is what I'v e got!!! FREAKY!!

    Please send any thoughts you might have, ideas of what could be (and possibly prayers!) as just came to terms with body falling apart, and thats is one thing....mind totally losing it another altogether. Thanks so much for help.


    Hugs to all of you!!!!
    Rachel (scared rachel...a former english major and current knowlege loveer whos worried won't have tohse things anymore! Help!)



    *********MEDS INFO IF YOU THINK IS IMPORTANT ************

    Did not take any of my night meds or morning ones, as scared to compound situation. Don't really think likeley to be drug interaction side effect dealie as this has been rually getting much worse for abt 5 days consistantly, and was just put on new med /herbs on monday, BUT figured if wanted opinions and possible things could be, should give you guys nay tools you might need.

    On monday....added Provigil, plus added another 2 mg zanafles (8 now) and elavil to list of pills

    (old stuff I was already on was wellburtin 300, 400 mg ultram for pain (still not doing much for it!) and 1mg klonopin for reestless leg

    I know I am doped like an elepahnt, but really not feeling even sleepy from it most of time due to extreme pain over last 3 mos...last 1 in particular.

    ...also added natural cleansed flax seed, fish oil, magnesjm and malic acid compound, and echinicea in a liquid extract on monday. Checksed for interactions on all with herbalist at store, doc adn phanrmacy, plus looked up myself in books.
  2. tandy

    tandy New Member

    God! I wish I had more time this am to answer you better~
    I just don't.
    I'm heading into the shower,taking my son to school,then getting 2 much needed to be done errands accomplished.

    I will,...reread this this afternnon and see what others have replied.
    But real quick,... don't panic(try not to)
    Alot of your post sounds like me when I'm at my worse.
    I forget,..I hafta think ove& over "green light',..
    or 'red light' while driving~
    Shoot! my son asked me what time it was one time and I looked at the clock and said "its a dollar 30"
    LOL I sware to god! my head is boinko!!
    so,..what time was it?? lol
    Will be back soon~
    Hugs
    Tandy
  3. orachel

    orachel New Member

    Weirdest thing is I am thinking light is red, light is red, red means stop...then just keep sailing on thru. I could work real hard to tell you how to spell a word, but simply can't type it...

    Flippin bizarre. Does seem to be getting a tiny bit easier to tyupe and focus, but fog so bad as to not be able physically to drive, type, read, comprehend...and forget about crazy things coming out of my mouth. I woke up from a dream screaming "Joe dont; kick the dog!" joe being my very kind and non dog kicking husband...and btw...we have no dog. That kinda stuff I can handle and even laugh at if its done around "friends" who know whats going on...

    ***Doc just returned my call. Said ministrokes good possibility. Husband raching home to take me to er for cat scan....not good******

    Please all, send up some prayers for lil ole me (even though not thursday and usually i'm not a selfish pray-er!)

    Still croossing fingers here,
    Rachel
  4. CanBrit

    CanBrit Member

    My fibro fog sometimes is totally disabling. It seems the more I can't talk, the more I try to. Somewhat self defeating.

    I wouldn't stop medication if I were you. Sometimes that can put you into a panic state. Pain can also cause great states of confusion.

    Like you, my FM started with a bang last August and stayed quite severe until after Christmas. Since then I've been in and out of flares. Its very frightening having all these multiple symptoms.

    I think it's a very good idea to go to the hospital. We should never try to self-diagnose. Take a big deep breath. My prayers and best wishes go with you.

    Eileen
  5. Bailey-smom

    Bailey-smom New Member

    No, I can tell you are not yourself. Is there someone you can call whether it be your mom or a friend? It may feel good just to even chat with them?

    Just know that a lot of people have that stuff happen with FM. I hate it! My hubby informed me that this week-end I left a candle burn at my office for 2 days – how could I do that? I often don’t remember driving places or can’t think of the names of common items at home or even rooms of the house – I hate that, especially when I’m talking to the girls!

    Keep in touch and let us know what comes out of the ER visit!

    Kelly
  6. LollieBoo

    LollieBoo New Member

    It is good that everyone is so on the ball, here- i hope by the time you read this, much more is figured out... If your CT is clear (I hope it is!), ask you dr to check liver- when mine has been out of whack, I have had MAJOR "fog"- I actually went to work one day and not only left my keys in the car, but left it running... didn't discover it until I went to leave! You may also want more detailed imaging (MRI/ MRA) done.

    I am praying so hard for you right now- I can see a HUGE difference in you just in the last three days.

    God Bless,
    -Lollie
  7. BLUEROSE7

    BLUEROSE7 New Member

    I'm glad you are headed to the ER, better safe then sorry.

    You know your own body and when something is totally not right.

    Please let us know when you can what the Docs say.

    I too often forget the simple things, names of things throughout the house, will say something totally off wall instead of the word I meant to use. I am very bad, about when typing or writing just totally going blank as how to spell a word..even samll simple words. I can be driving along and just pass right by where im suppose to be going, get down the road a ways and say what the heck, where am I going.

    I will be Praying for you and please let us know how you are, when you feel upto it.

    (((Hugs)))
    Bluerose
  8. Rosiebud

    Rosiebud New Member

    I have printed some info I found on cognitive difficulties for you. This can be really scary especially at your level, at a lesser level it can be funny.

    I hope its not ministrokes but apparently we can get those and Mikie has run some threads on this, Klonopin is good for this.

    My problems get worse when I'm flaring or very tired. I doubt if you are having an interaction from your meds or supplements but we are VERY sensitive to meds etc. so its better to check that out.

    I cant drive anymore Rachel because of muscle pain and brainfog. You should maybe stop driving when you are feeling this way. Sometimes we just need to shut down and not communicate until feeling better and I hope you get over this bout soon.

    love Rosie

    Cognitive Problems

    Fibro/CFS may cause problems with memory, planning, foresight, and judgment.

    The most frequent cognitive abnormalities are subtle defects in abstraction, memory, attention and word finding. They are usually associated with emotional lability and decreased speed on information processing. Thought processes of the brain are interconnected to the conscious areas of the brain via myelinated nerves. There can be problems transporting memories to consciousness and processing of thoughts…. creating difficulties with concentration and reasoning..


    A number of compensatory techniques can help with the cognitive problems. It should be remembered that some tasks and occupations need an excellent memory while others do not. Nobody's memory is perfect and everyone suffers from memory lapses and occasional confusion. Stress, anxiety, and fatigue all decrease cognition, especially memory. Poor concentration may add to the problem.

    The following strategies have been found to be helpful in managing cognitive problems:

    Make lists - shopping lists, lists of things to do, and so forth.

    Use a calendar for appointments and reminders of special days.

    Establish a memory notebook to log daily events, reminders, and/or messages from family and friends.

    Use a tape recorder to help remember information or make up lists.

    Organize your environment so that things remain in familiar places.

    Carry on conversations in quiet places to minimize environmental distractions.

    Ask people to keep directions simple.

    Repeat information and write down important points.

    Establish good eye contact during any discussion.


    In this age of computers, both electronic and non-electronic organizers may be very helpful in helping to bring better order to one's daily life.

    Cognitive problems may be minimized in everyday life if a person with such a problem can be made aware of the problem and is willing to manage them constructively. The quality of interaction with family and friends relies on awareness and understanding of all parties involved. It is important that family and carers are aware of the cognitive problems and help in minimising or overcoming them.


    [This Message was Edited on 09/21/2005]
    [This Message was Edited on 09/21/2005]
    [This Message was Edited on 09/21/2005]
  9. Sandyz

    Sandyz New Member

    but my brain fog is that bad especially when I get over-tired. I have been thinking of going to a neurologist myself just to make sure everything is ok. Let us know how your doctor visit goes.
  10. dorrene

    dorrene New Member

    Hi,
    I have a had brain fog since the early 80s. Stress of any kind will bring it on. Colds and flus hard day at work etc...
    Also antidepressents cause me to almost go into a coma. Even at small doses.
    Trying alteraive medicine may help you.
    Just replace some of your meds with a natural counterpart.
    Find a doctor that is into natural medicine. My family doctor has told me that western medicine does not have the answer for CFS and Fibro.
    "
    On monday....added Provigil, plus added another 2 mg zanafles (8 now) and elavil to list of pills

    (old stuff I was already on was wellburtin 300, 400 mg ultram for pain (still not doing much for it!) and 1mg klonopin for reestless leg "


    Elavil might be the problem this time. I know this drug well. Look up the side effects. And look up the side effects of all your meds. Buy a drug referenece book for nurses...easier to understand.
    Look at my profile and see what I take.
    Hope this helps,
    Dorrene
  11. nice2meetu

    nice2meetu New Member

    Mine are not as severe. I have had a spell where my right and left were confused meaning: I would say turn left up there when I meant right, and no matter what I could not get that straight! It happend alot a few months back and then just went away.

    I also skip letters while righting. Sometimes I flip letters in a word. Still happening. Doesn't frighten me.

    I also have spells where I read and words come up missing and when I reread something its back again. Makes it difficult following directions. But am used to it so I just read everything a few times before attempting.
  12. NyroFan

    NyroFan New Member

    Orachel:
    I have a neurologist who takes care of me when it comes to these symptoms. I have had all kinds of tests and they usually can come up with something and then treat the patient in a more planned way instead of helter-skelter.
    That's just what I did.
    Hugs,
    NyroFan
  13. KJ2003

    KJ2003 New Member

    Sweet Rachel,

    I remember when I first had symptoms of FM with the all-over pain that didn't go away or let up. If I remember correctly, my first flare lasted for a good three months or so. That first bout was horrible (and scary because it was new to me then) and it has been a while since I have thought of it but I miscalculated things, too.

    You may be trying to be that spunky, go-get 'em person that you were before you were diagnosed and your brain is getting confused because it's having a hard time trying to keep up. You are quite the go-getter and between FM and your medications, things are going to be a bit different for you from now on. They don't have to be completely different but there is a period of adjustment. This may very well be what you are going through but I do not know. I'm glad you are going to see your doctor.

    Please let us know how you are doing because we're all worried about you.

    You are in my thoughts and prayers.

    :)

    Take care of yourself,

    Ki

  14. orachel

    orachel New Member

    ...but equally disturbing lack of news. It is much easier to type now, so at least I can have an easier time of trying to get some educated input (you guys) because the doctors are all just no help whatsoever.

    Here's what happened, then will try again to explain (now that my thinker is working a tad better) why I am still very very concerned and see if anyone else has any input or bright ideas, because I am just fresh out of options, here.

    I went into ER and after going thru my very complex history with at least 4 different people (the norm, alas.) finally got in to see the doc on call. Interestingly enough, he happens to be the same dude who I saw last year with crazy heart palp issues...wasn't much help then either! I explain that my left side has gone mostly numb, along with some of my face, and that while I'm feeling much better RIGHT THEN and able to articulate clearly, that for the last few days really bizarre cognition things happening.

    Does that happen to anyone else? Have major prob, finally get in to see doc, and right then prob seems to be less severe (thus less visable to doc!) than has ever before? I think that's the Murphy's Law of Medicine.

    He does pretty normal seeming exam (though I've never had to deal with anything like this before..) where I'm doing things like walking with one foot in front of other, touching his finger then my nose with my forefinger, etc. All of this stuff is even more distressing to me because I can tell its not going well.

    I try to talk to him about my biggest concerns (basically the most common things I see/hear associated with FM, but also can be very degenerative physically) which are what I'm VERY ANXIOUS TO RULE OUT. That's the key to this story. Told the guy repeatedly what my concerns were based on talking to my docs/all your advice/research etc. I was trying to rule out stroke (mini or otherwise) and lesions and growths of any kind. Seems pretty reasonable when you go to ER with major neuro probs, huh? Apparently not to this doctor.

    He told me that they just flat out did not do MRI in ER unless it was an emergency. This wasn't an emergency???!!! 30 yr old woman with weird visable neuro symptoms, major numbness, and a recent diagnosis of a disorder that can commonly go along with tons of other stuff that's often diagnosed later because docs just lump it all in with FM?! Oh, and should probably mention that my mom died totally unexpectedly from cardiac arrest when she was 36 (and in seemingly perfect health right up until her heart attack!). He knew all this, said nope...not an emergency. I'm thinking maybe they should change the name to the "if you have a little problem" room...seems a lot more accurate than the emergency room!

    Finally he agreed (after me practically begging!)to give me a flippin cat scan at least. Sent a nurse in to do bloodwork (who leaned over and asked me if I was having any numbness issues and was really tired, because she's been telling her doc about her problems with these issues for years, and he keeps telling her there's nothing wrong! Referred her to this site, of course).

    About 2.5 hours in the er (and no time in waiting room...at least the triage nurse knew there was a time issue, here), they finally took me for cat scan. Easy breezy procedure, except at this point I'm crashing bigtime physically because of stress, etc...and total lack of meds for 1.5 days. Test done, Cat scan tech asked me why someone so young was getting a scan (being friendly, basically). I told her that I had FM, neuro issues getting much worse, numbness etc, and that I was very concerned about possible strokes, lesions, masses that could signal a big problem, as my body was really telling me there was something wrong.

    Tech looks at me kinda funny and says "shouldn't the doc have ordered a Cat Scan with Contrast?" Being new to all of this lingo, I ask her calmly what the difference is between that and the test I just got after begging and waiting 2.5 hours. "Oh, it's just much more likely to show problems like small strokes, lesions and masses" says Tech. Oy. And she happened to mention that a woman she worked with had FM and was having problems with pain etc...referred here here, too. Its official. This is really an epidemic!

    So...I am boiling mad at this point, but realize that if I don't keep it together I'm likely pop a blood vessel out of pure righteous indignation! What on Earth?! They gave me the test, out of all three that are possible, that is the VERY LEAST LIKELY to rule out any issues tjat my doctor and I were concerned with!!!

    Finally, doc returns and tells me the good news....I have NOT (whew!!!!) had a MAJOR stroke. Whhaaaa? Asked him to give me a little more information as I wasn't quite sure what he meant. He explained (and clearly he's seeing no irony here whatsoever!!!) that its possible I could have had, or be having ministrokes, or have a small lesion that the test didn't show! I tried to explain again that my entire goal in seeking medical attention had been to rule out my doctors' likely suspect MINI-STROKES and the lesions and masses I'd discussed with him repeatedly because I was concerned about possibly causing major unreparable cognition problems for me (or worse, obviously) if they were left untreated. He told me that he had concern that I might possibly have issues with those, too, as there were visable neuro problems and the CAT Scan often misses those.

    His "emergency medical assistance" basically consisted of telling me to take a baby asprin every day and to call my PCP who stated via phone that he'd "work me into his schedule sometime in the next week" so PCP could refer me to see a neurologist, who could then schedule an MRI (GRRRRR...I asked for an MRI but he told me it wasn't enough of an EMERGENCY for one!) that might tell me whether or not I am having (as intuition, and all data together is telling me!) a possibly degenerative or deadly problem in my brain. Lovely.

    Icing on the cake? I happened to glance down at my "discharge instructions" as wonder hubby and I are looking at each other in disbelief. Immediately my eye falls on "Diagnosis...FIBROMYALGIA - At this time there is no known cause of fibromyalgia." I just started laughing like a loon.

    Add in my wacky problems with cognition, typing, all craziness with car yesterday from above post, rather large tiff with wonder hubby last night, nice make-up chat with hubby this morning (at 4:30am..before he leaves for work) and my EXTRAORDINARY ER EXPERIENCE, and this is officially the most terrifying surreal 24 hour period I've had in my entire life.

    Thanks all for your help this morning. Info was all very helpful...affirmation that i'm not a total nutball even more helpful! lol

    I did want to mention a few things specifically as reread my cry for help post and realized it wasn't exactly easy to understand (or more accurately, barely the english language. duh. neuro issues!).

    BAILY-SMOM....You're 100% right. Realized 1st thing had to get some "adult supervision" for safety and sanity reasons! Husband just has to work a lot right now due to his responsibilities there. Prob is, I live multiple states away from all close friends and family with two exceptions... 1) my mother in law, who is a wonderful woman, but her staying with us while we're in this stressful state is likely to send both myself and wonder husband to the funny farm! And 2)godmother, who is herself disabled (but has a lot more abilities than i do at this point!). Called godmother 1st thing...she's on a bus as we speak to get here from Pennsylvania.

    LOLLIBOO...I'm kinda weirdly flattered that you noticed a change in me over last few days! Thanks for the attention! lol...Really comforting that someone far far away who's never met me in person is looking out for me! But kinda scary that its been that totally overt.

    CAN BRIT - Not stopping meds normally is great idea, but was alone in my home, and was worried that I'd somehow further depress my nervous system and not recognize that "special" time when big issue suddenly becomes trip to the ER. Plus, thought there was at least a slim possiblity that the interaction deal or even the sheer volume of medicine they have me on could possibly be the problem. As we all know, meds tend to ads totally new set of "symptoms"...the side effects!

    DOREEN...absolutely my view also on natural meds. My plan has been to gradually phase them in and phase out scripts with an eye toward being as natural as possible. Problem is, my FM started (or shall we say reared its ugly head? clear now that there were major precursers of this for years...like since childhood.) quite literally all at once, overnight. That in and of it self is kinda unusual, it seems. Plus, I've been almost completely disabled in every way for 3 mos...just getting to doc appts has taken every ounce of energy, and I've had to cancel at least one doc appt or aquatic therapy session a week cuz I just simply couldn't get there....just really haven't had the "juice" to devote to finding the right nutritionist or plan for me. I was hoping to get a little bit of symptom relief off meds to allow me to have more energy to devote to my wellness plan, but that thinking very well may have caused this problem. Way too much medication, but it all seems necessary to doc (and really to me based on severity of symptoms) to get me "under control" right now. And really truthfully, I was such a mess physically with pain and ridiculous fatigue and it takes a lot less energy to pop some pills (that the docs swear will help! lol) than to get to organic grocer and start blending flaxseed and divising whole food plan....I'll get there though...eventually!
    Also trying to phase in "natural" as I know there is very real possiblity that when detoxing I'm going to get worse before better....just couldn't even face that!

    ROSIE....You brilliant girl! The article you gave is almost exactly the "survival skills" I realized that I desperately needed. Went out just yesterday and got whole system of notebooks, dividers, folders, etc to track and every thing I do. There's been way too much of "i know I need to take a pill now. Or wait, did I just take it?" going on! Doing exact med logs daily plus writing down every pertinent bit of info I could possibly need in a portable organizer thing. Hey...yesterday at docs I forgot MY BIRTHDAY! And in ER, nurse asked me my last name, and I totally spaced. On my name! lol And last friday I missed an aquatic therapy session because I thought I was reliving thursday...oy, what crazy measures! But i realized that if I didn't do all this, and keep it as organized and consistant from day to day I was gonna have even bigger problems. That list is great, btw....I also set up a portable "command station" thing in a cute little suitcase dealie that has all my necessary stuff all easy to move in case I have to "shift" my center of activities when I'm in major flare. If I have to take to my bed, I just take the suitcase with all stuff I need. I was having bigtime issues, esp with all the fogginess, of literally wearing myself out of energy by having to make too many trips. I'd go into kitchen for one thing, get settled again, then realized I forgot something else I needed. So, tracking everything like crazy now because I've "miscalculated" basic math and taken too little medication (hello! I'm a mortgage broker! Have forgotten basic math!), and literally "forgotten" to eat anything at all for 2 days straight! Why isn't by body alerting me to this kinda stuff like it used to? Very odd indeed....


    AND EVERYONE....now what the heck do I do?
    I'm still very very concerned that there is something other than fog happening because of a few weirdo things....

    This whole thing of the Mental issues started out pretty much the way everyone talks about. I'd forget names of books, or not be able to recall certain "basic" words for a minute. This was going on for last month or so, and I wasn't overly worried as it was scary, but I knew it fit the symptoms of FM.

    Everyone who posted here says that they get really foggy on days when they're overtired, or in extreme pain, or basically "all flared up" in a big way. That also fits everything I've read abt fog here overall. Fits all the research I've done...one of the reasons we have to take it easy when necessary is to keep our mental capabilities sharp. All of that makes total sense in that fog worstens generally as symptoms worsten overall.

    I'm totally the opposite, and plus add some other weird factors. I have been flat out knocked down physically for 3 months solid....constant pain and fatigue, usually in 7-9 range, which is pretty dang intense, esp when taking some pain meds. In last 3 days (pretty much overnight) my pain levels have DRAMATICALLY DECREASED and my energy levels have DRAMATICALLY INCREASED. That would be good, but physical symptoms lessening for 1st time in 3 months all at once after almost no improvement at all happening at exact same time as sudden onset of MAJOR cognitive issues that are very different from any experienced before all just seems a little too coincidental for me. I can't reach any conclusions other than the fact that they're directly related, and thats pretty scary as it could mean those cognitive issues are affecting my body in a very strong way.

    And at the same time throw in the wild almost manic flashes of inspiration that are like nothing I've ever experienced. I'm thinking and reasoning better than I ever have in my life!! I'm working out entire "theories" in my brain for all manner of things almost instantaneously and coming up with solutions to problems that have been bothering me for years! I'm getting TONS of sudden very elaborate ideas about business ideas and projects, when I've been wracking my brain for months to think of just one possible option to help out financially when stuck at home and can barely move. I'm getting bizarre and oddly elaborate ideas for inventions, here! Plus just "overnight" seemed to completely stop worrying about MAJOR tangible concerns that my current physical problems bring ($, career, kids...essential kind of stuff...so you'd expect some major worry this early in a chronic illness, right?). There's this overall inexplicable sense that It'll be fine, no concerns, just focus on health...All the "positivity" and "acceptance" that I'd been really trying to embrace for last three months (and really struggling with at times!)was just suddenly THERE. Almost couldn't muster up a single negative thought, even in these circumstances. And the thing about this is that none of this...none of it (even the really helpful and great bits) are AT ALL indicative of my normal personality. I'm a bright girl, but I don't usually have a dang muse sitting on my shoulder and screaming ideas at me constantly! I just flat out don't normally get these intense all at once "blasts" of inspiration. It really felt good, but even 2 or 3 days ago I was talking about it being very weird and very unlike me, very sudden, and just feeling completely foreign.

    Add in some weird headaches that are new, and some numbness and tingling that is definitely loss of sensation/circulation and not sensitivity....

    I just feel that something is going on wildly outside my control in my body. And while A TON of it is really GREAT....waay less pain, way more energy, inspiration to do and be all these wonderful things that could be my contribution to the world kinda stuff and it just happens to correspond with this sudden DRASTIC worstening in my overall cognition abilities and both short term and long term memory, and complete inability at times (much better now with typing, clearly) to write or type words or sentences.

    After reading all this (if any of you actually made it this far! lol), am I the only one thinking all of this combined bears a freaky resemblance to John Travolta's character in the movie PHENOMENON??!! Only without the aliens, of course. I just keep thinking of possibles, and the liklihood of all this going on at once, pretty clearly interrelated, after 3 months of virtual "sameness" and I just don't know what to think. I've gotten pretty used to my body doing totally bizarre and unexplained things over the last few months. Much of it has been pretty traumatic I went from up and around, no issues to virtually housebound overnight, after all. And honestly none of that felt quite as odd to me as this does.

    I don't know why I seem to feel such need to try to convince all of you guys that something 'weirdo' is happening in my body even when at first glance there seems to be nothing wrong! Like all of you haven't been there yourselves. LOL

    Guess I just have major leftover issues (after my utterly ludicrous and pretty dang unproductive er experience!)with doctors right now. And especially ones who just won't listen and won't put ANY faith whatsoever in the intuition of their PATIENTS (who, after all, are the only ones in the whole mix who can actually "feel" what's going on!). Sheesh. Western medicine definitely has its issues.

    But until I actually get in to see my PCP (and they're gonna TRY to work me in this week) and get a referral to a neurologist (who probably has a long wait time for appointments also!), and then manage to convince said neurologist that something is rattling around in my noggin and more testing must be done immediatley...What on earth do I do? Am I really supposed to sit here with this crazy stuff going on that really doesn't seem to fit any FM patterns that I've come across when you look at the sum of this whole mess, and I've got intuition telling me (plus my whole entire body and mind!) that there could be a serious problem here!

    Ug...really hoping ya'll have some insight here. Aside from calling both of my current docs, both of whom know I was in the ER this morning, and know that I've been telling them cognition was a big issue for over a month, and begging them to get me an emergency appt with neurologist ASAP who has great diagnostic experience...which of course I've already done...

    I just cannot think of what else I could do! Aside from sit here worrying and possibly watching crazier stuff develop, that is. Really, if he wasn't a fictional character, I think I'd be calling Dr. House right about now! He might be insensitive, but would suffer the indignity just to have good diagnostician (sp?) tell me with any degree of confidence that my brains aren't going to explode! Or currently in the process of mini explosions! While i'm sitting here waiting! If I dont laugh about all of this, I just might start crying and not stop. So, I'm trying to keep laughing...really I am. I do absolutely know how important it is to relax, and not worry myself...but how am I supposed to relax with something like this that feels so "wrong" to me?

    Seriously, you guys...if anyone has any advice in the "if it were me I'd..." category, I'd really welcome any possible options of where I go from here. I may very well just be flipping out over a truly remarkable set of coincidences and funky intuition, but I'm not really ready to stake my brain on it, you know?

    Hugs to you all...specially all of you who took time to read the nightmare post from this morning, and the almost equally as disturbing (book!) post of the follow up....

    Keeping happy thoughts....kinda...
    Rachel
  15. ldbgcoleman

    ldbgcoleman New Member

    So happy you are home and well. I thought of you today because I saw some really beautiful blue flow when I was poking around.

    I know that if you do have a stroke it is very important to get medication immediately to surpress the damage. I think maybe you shold call back to yuor Dr and tell them this is an emergency. They have to see you tomorrow and it cannot wait. The weekend is coming up and it would be best to get in before then.

    Please take care of yourself you are precious and dear. Lynn
  16. Trevor1

    Trevor1 New Member

    Sorry to hear you still haven't really found the answer to your brain crazyness yet. But I just wanted to add that niether have I. And after reading your posts, I feel as though you maybe feeling what I am. I haven't been diagnosed with FM or CFS yet. But I have been sick for almost 3 months. Real bad fatiuge, and brain fog. My worst symptom by far though is the "brain fog." And most people say there's comes and goes. Mine is constant, 24/7. Which scares me the most, I have had two MRI's done. One with contrast and one without contrast. Both came back perfectly normal. Im still awaiting an infectious specialist. But if he has no answers for me, im pretty much at a dead end with this Since ive had every blood test in the book. My brain fog is a feeling of not even being here, weird as that seems and as frustrating as it is to explain to doctors. I know whats taking place, it just feels as though im not even present in reality. Like im watching a stranger. Its beyond frustrating, id give anything to have one day of just feeling like I was completely here and normal. But I haven't given up hope yet. I to miss words, type completely the wrong things, they sound right in my head but come out wrong somehow. I to, fear driving, I have to keep reminding myself that I am driving, which is real bad.

    Well anyway I just wanted to let you know I think we may be experiencing the same feeling. My concentration is shot, along with short term memory. And its very hard to keep focused for the shortest amount of time. Im currently taking B-Vitamins, Antioxidants, and DSF Formula. Zoemurr said DSF had helped with his brain feelings, so I decided to give it a try. No luck with it yet, but Ive only been taking it for four days now. If you want to look into it, its a Nurti-West product.

    Well I hope you figure yours out, and please post your progress here since any answers you find would most likely aid me as well. Good luck, and take care.
    Trevor
  17. jennypee

    jennypee New Member

    I'm so sorry you're experiencing this.

    I'm a bit confused as to the timeline. Did this start when you started Provigil? I had some scary side effects with Provigil that faded after a week or so. Yours sound more severe, but it seems similar. I had the crazy idea spurts, and my words got all mixed up because I was still foggy but my brain was rushing a million miles a minute and I had to get the words out ASAP, or I felt like I'd explode. I didn't drive or even usually leave my house, but I got everything mixed up all the time. I have forgotten my last name and my birthday also. For some reason I kept thinking it was the 19th instead of the 9th. (funny because my father always thinks I was born on the 19th.)

    Regardless, I agree with whoever suggested that you insist your pcp sees you immediately.

    I'm glad you're here. Your posts have reminded me that just because my body is cripply doesn't mean my personality has to be cripply too. I am not my body.

    Thanks. Please keep us updated.
  18. orachel

    orachel New Member

    Totally think I understand what you mean. I described it as an out of body experience...still in my body. Weird detachment feeling, but my brain still seems to be working...message just isn't getting thru to fingers or losing track of where I am in a task.

    Very disconcerting!
    I sure hope they manage to pin down a diagnoosis for you!
    Rachel

  19. Trevor1

    Trevor1 New Member

    I keep telling the doctors I feel "detatched" and yeah like its an out of body experience. My brain works and all, besides the bad concentration, memory everything that comes along with fog. Its just the thing that bugs me the most is that detatched feeling. I wish It would let up a bit, im hoping ill be able to come across some supplement, drug etc to ease it up. But so far no luck :(.
  20. orachel

    orachel New Member

    You mention having every blood test in the book....There are a ton of them that are "outside the book" of traditional treatment. Many here are getting extensive bloodwork (and I mean extensive...thyroid function reads normal in docs office, their snazzy test shows irregularity). Jut thought that may be an option for you. Its at FFC (info all over boards if you aren't familiar with that)...also are viral infections associated often with neuro things? They are great at locating dormant viral infections that can cause all sort of wacky issues throughout body. I've not been there, but have been to similar wellness clinic years ago...they did something called , and i'm gonna screw this up....something like kesiotity? anyway, its a very simple science where they place tiny bits of allergens of all sorts, cigarette butt, virus on cotton ball, pet dander, anything that might be affecting you but be hiding. Your ability to withstand pressure when pushing against practioners hand actually indicates a very toxic reaction to the viruses you have. Sounds weird, I know...but lemme tell you, I had extensive allergies as a child (like shots 3x per week) so I'm pretty familiar with my basic allergins...had shared non of this with her. Cig but (smoker then), all allergens that I was and knew I was allergic to such as bunny fur, ragweed, few dormant viruses...I literally had no strength when these tiny bits of them were placed on my chest! Very easy, very non invasive, and might be good indicator of where your problem lies at least in general for you, so they know what systems within your body need support. I know I got and spelled the name wrong, but if you check a list of common homeopatic diagnostic procedures, I'm sure you'll see it. Sound nuts, but was healthiest point in my life when I was supplemented (and medicated....my doc was a D. O.) and treated for viral infections with iv......

    Give it a whirl before you give up looking...its always good to know you've got at least onemore option ahead of you for answers.
    Rachel