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Need help looking for specialist

Discussion in 'General ME/CFS Discussion' started by mem777, Oct 30, 2016.

  1. mem777

    mem777

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    Hello, I am new to all this and I am wondering what type of doctor is most effective in diagnosing and treating these symptoms? Iv seen many neurologists and general practitioners and they never know what do do with my test results or never find them too troubling. The results on tests such as ANA and lymes are atypical but they never seem worried. I am having terrible brain symptoms and looking for help. Thank you very much . Please forgive my typos.
     
  2. lnester7

    lnester7 Seven

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    Do you mean CFS symptoms?
    For Orthostatic intolerance(OI) = (brain fog, inability to stand for long, HR variability...) you need an electrophisiologyst (type of cardiologyst) that will help you. I have a lot of neuro issues (drop stuff, memory, falls....) and mine are due to OI.

    For my inmune issues I see a CFS doctor.

    For sleep: I saw a sleep specialist and then the GP handles the refills.

    If you can list your symptoms (as much as you can) we can help you organize them into the right category. But your GP should be able to help you also, what country are you at/?
     
  3. Dechi

    Dechi Senior Member

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    It would help if you said where you're from also...
     
  4. mem777

    mem777

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    Hi, thank you . I am in Palo Alto, California.
    My symptoms are:

    Severe brain fog
    visual snow/static/floaters
    sensitivity to light and sound
    derealization-disorientation
    head pressure to migraine
    muscle spasms (constant)
    twitching
    trouble sleeping
    light headedness upon standing

    Worst is my cog fog and disorientation type of feeling. (fuzzy head)
     
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  5. Dechi

    Dechi Senior Member

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    There are some good ME specialists in the states. Maybe someone from California will come along and have suggestions. I dont know if it's against forum rules to give specific specialists names.

    The derealization part has me curious, though. I don't think it would come from ME. Do you have GAD ?
     
  6. Daffodil

    Daffodil Senior Member

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    my suggestion: go to Reno to see Dr. Kenny DeMeirleir.
     
  7. lnester7

    lnester7 Seven

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    This could be so many things, do you get worst after exertion? Observe that is the key to CFS.
    1) Something you can do is do the poor's men tilt table test, google it. This will tell you if you have POTs at list.
    2) You can ask your GP for a sleep study (check for apnea), pay attention the kind of drug they prescribe if you have problem falling sleep vs staying sleep (if it is staying sleep they should give you a stage 4 inducer not the normal insomnia drugs)

    While you get in line to see a CFS specialist you can be working on the major things with your GP. I am no doctor, just some observations from patient experience.
     
  8. purrsian

    purrsian Senior Member

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    These are also many of my worst symptoms, although I don't get the migraine, just terrible pressure and fuzzy type feeling. So far, I haven't discovered the cause aside from it not being sinusitus. I do have POTS, which is definitely something you should investigate with the light headedness upon standing. POTS involves circulatory issues and I think sometimes the head type symptoms can be a result of abnormal blood circulation in the brain.

    I had a tilt table test at a cardiologist to diagnose it, although I only saw him that one time. There are medications for it, but I haven't tried any yet. I'm going to ask for a referral to a dysautonomia doc to talk about meds in detail (I'm not sure which speciality, but it's someone who is knowledgeable about the autonomic nervous system). Try googling dysautonomia specialist palo alto california if you think these might be some of your issues.

    Note that some types of POTS involve BP changes (fainting, pre-syncope symptoms, black dots in vision) but some involve just tachycardia. Poor man's tilt table test is a great way to figure out if tachycardia is an issue for you - if positive, just ask your GP about it and say you'd like a tilt table test.
     
  9. purrsian

    purrsian Senior Member

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    Also I find that ibuprofen plus codeine helps with the head symptoms most of the time. It's obviously not ideal to take continually over a long time, but I figure I'd rather chance side effects than live with this horrible head feeling preventing me from doing much every single day. At the moment I take two tablets once or twice a day as I'm in a CFS crash so everything is worse. I'm not sure why it helps, but I've read on here that others have found opioid medications to be beneficial for their cognitive symptoms in addition to their pain.
     

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