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Is this normal brain fog or a crisis?

Discussion in 'Neurological/Neuro-sensory' started by NilaJones, Jul 6, 2013.

  1. NilaJones

    NilaJones Senior Member

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    Hello folks, I hope you can help me.

    I can't remember much. For example, I remember nothing that happened yesterday except that I ate some soup. I have been planning a family get-together for a month, it takes place tomorrow, and when my mom said an hour ago, 'I'll see you tomorrow,' I had no idea what she was talking about.

    But when people remind me of things, I usually suddenly remember them. For example, my mom asked me if I had ordered a cake for the party. Surprise! I did. Yesterday. Now I remember one more thing that happened yesterday.

    So is this normal? For us? Or does it mean I need to look into some sort of severe neurological disorder? I have been like this since getting sick; it gets worse or better as my level of sickness varies. Now is nearly the best it has been. I even remembered to write this post.

    I joke, by I had a total panic attack over this, this evening. Is something horribly wrong and should I be in the hospital? I keep forgetting that it is not normal to go through life with no memory. Seriously.

    Thank you for any feedback.
    Wayne likes this.
  2. WillowJ

    WillowJ Senior Member

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    I have a lot of problems with memory. I forget things I did recently, things I'm supposed to do, etc. The most bothersome is that I forget important memories I had even from before I was ill. I've lost great swaths of my memory from times I was most ill.

    However if it concerns you or if you're having trouble with your daily tasks, it's definitely something to bring up to your doctor. If nothing else, so they can chart it, but maybe they would have some ideas to help (medication?), or might want to ask you questions.
  3. NilaJones

    NilaJones Senior Member

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    thanks, Willow :). It helps to know i am not alone.

    Yes, I have years I do not remember.

    I have brought this up to my doc, but she is a GP and not a CFS doc. She referred me to a neurologist, but when I learned that one appointment would cost me a thousand dollars out of pocket (!!!) I figured I should think about it before making the appointment. Then I forgot. That was about 3 months ago.

    Things often fade in and out for me, over weeks or months, I forget something, then a few weeks or months later I remember it, briefly, and it is gone again. The neuro referral is an example.

    Has anyone else here gone to a neurologist? Was it worthwhile? $1000 worth?
  4. Valentijn

    Valentijn Activity Level: 3

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    I've been referred to neurologists twice (covered by national health insurance here). The first one spent a couple minutes doing a very cursory physical exam, then told me there was no reason to do a scan and he couldn't help me.

    The second one told me drugs and surgery (?!?) couldn't help me - right after I had explained to him how a drug was helping with my OI - and that only exercise would help. He printed out the PACE trial when I asked for his foundation for that claim, and told me that the symptoms of the people involved were irrelevant when I pointed out that it was a chronic fatigue study, not necessarily involving people with my main symptoms (PEM and OI).

    From what I've heard, this is the nearly universal experience of ME patients with neurologists. I think there's one or two ME neurologists in the world who might be worth seeing, and there might be some other neurologists who aren't ignorant arrogant assholes, but I have my doubts.

    Save your money, and find a good integrative MD or fully licensed ND who will help you investigate and treat your symptoms.
    Wayne likes this.
  5. NilaJones

    NilaJones Senior Member

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    My official diagnosis is viral encephalitis (from HH6), not ME/CFS.... but I suppose a jerky neurologist could re-diagnose me. But what about a non-jerky one?

    I hope to hear from a few more folks here about memory issues, too. I don't know WTF is wrong with me, or if I should be freaking out and treating it like an emergency, or if it's just life.
  6. Valentijn

    Valentijn Activity Level: 3

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    I think they'll look at the viral/immune issues as being outside of their scope of knowledge and give up while pretending they know everything there is to know. But maybe you'll get lucky.
  7. WillowJ

    WillowJ Senior Member

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    In my experience those are rare, but they do exist.

    What country are you in? Do you have a name or clinic name? in the US we have these patient review sites. If you do an online search for the doctor and city, you will find some reviews (not many; it hasn't really caught on yet, but some). If the reviews are poor, that tells you something. (check the details, which will separate the doctor, the staff, and the wait)

    Also see if you can find their online bio from their clinic. Here they will usually tell you what they want you to know about the way they approach their practice. Sometimes that can be helpful.
  8. NilaJones

    NilaJones Senior Member

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    WillowJ

    Oh, good ideas, thank you! Now I have to find where I wrote down that neuro's name....
    WillowJ likes this.
  9. RedLineBoy

    RedLineBoy

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    I have these issues. However, when I was going to school I can study in and out and was able to ace the exams. Everyday I felt like memory was weak and crappy. But in my Anatomy and Physiology class I was able to get an A. I had to study weeks in advance but was able to get an A. Now that I stopped schools, it's been few years I feel like my memory is weak again.

    This comes and goes. I know it's due to Ebv/CMV / HHV 6...Because Prior to these shitty virus I was healthy and fine. Now I feel confused most of the time.
    cph13 likes this.
  10. chronix

    chronix

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    Start worrying when you do something and people remind you that you've already done it and you have no recollection at all of doing it.

    These memory problems you describe are universal in ME, judging by accounts of countless others, and I experience them myself. There's hope though: people who have gone on to recover don't suffer from this anymore, so any damage or harmful process is reversible.

    Do you suffer from lack of concentration and poor balance as well?
  11. Aerose91

    Aerose91 Senior Member

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    I got ME from HHV6 encephalitis as well, and I have exactly what you describe. I am much, much worse than this though- in regards to severe severe dissociation, complete loss of touch with reality and psychosis. I'm so bad I can't even remember what's wrong with me almost all the time.
    I sure hope there's hope.
  12. cph13

    cph13 Senior Member

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    @Aerose91 wish there was a dislike button on here. I empathize with you and the rest of us.
    @NilaJones I have high titers of hhv-6 and EBV. I was told by my Infectious Disease specialist that these brain issues are part and parcel of this ugly package. I too have major cognitive issues too.
    Ex:
    I went away for two weeks n totally forgot what I did on day 2 and 3 for about 2 weeks.
    I have have difficulty focusing and my comprehension is poor esp. on this site but honestly mostly anything. I'm beginning to have difficulty with tv and the speed of information.

    I went to a well known NYC neuro. who did nothing for me except collect data (all 3 times) a total waste of 6 months. He lured me while only wanting my spinal fluid for research which I refused. Need we go through more suffering????? Despicable if you ask me.
    Yet, I still search for someone else. I am determined to be able to LIVE not exist. I have an appt. for February...a long wait. This neuro is studying mitochondria dysfunction. He is a specialist in neuromuscular disease e.g.. muscular dystrophy. I maybe barking up the wrong tree because of his speciality but he is THE ONLY ONE AROUND that comes highly recommended.
    Columbia Univ. which he is a part of has a staff of well over 100 neurologists, perhaps this visit is an introduction into the world of neurology.
    I am taking famvir for my high titers of the viruses I have. I will ask to have my meds upted or changed by my I. Disease dr. hoping that will clear/lower the viral load which I hope will help my brain. I am also doing Freddds' methyl. protocol. Something has to work. I wish you all the best. If I have ANY success in improving my brain function I certainly will share. Good luck to all of us Happy Healing xo C
  13. Aerose91

    Aerose91 Senior Member

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    cph13, please keep us informed

    I was admitted to Yale neurology and given the entire gamut of tests- including a lumbar puncture
    (where they didn't test for HHV6). Nothing came back screaming a problem so they demanded that I be seen by psychiatrists before being discharged. Psychiatry told me I have depression and need to exercise more.

    Long story short, I've seen some of the best neurologists in the country and they knew NOTHING about what was wrong with me. They told me I'm crazy pretty much
    Sidereal and Valentijn like this.

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