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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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Kilmas versus Dr Lapp and Dr Black?? Which one for son??

Discussion in 'ME/CFS Doctors' started by hensue, Aug 10, 2011.

  1. hensue

    hensue Senior Member

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    I was a little upset not knowing yet if my son has this dreadful crap we have. When I called Dr Lapp the girl says right away you know there is no cure. I think if my son heard that right now he would commit suicide. Which he has threatened because no one listens and the pain is not in his head but all on left side.

    He lives in NC and I his mother live closer to Kilmas. Where would you go for test first to see if cfs is his problem??
    Thanks all
    We are all in this together!
     
  2. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    There is no cure for many illnesses. You can get better though. Rude to be told that right away.

    My thoughts are with you.
     
  3. Timaca

    Timaca Senior Member

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    If your son has pain all on his left side I would see a neurologist for a work up first.....

    Best, Timaca
     
  4. Valentijn

    Valentijn Activity Level: 3

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    There may not be a cure, but there are treatments (supplements and such) that can make a biiiig difference. I find the one-sided thing to be interesting, because we just had a thread discussing that 2 or 3 of us (the 3rd wasn't very clear) had been diagnosed with very rare hemiplegic (one-side of the entire body affected) migraines in the past.
     
  5. justy

    justy Senior Member

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    Hi Hensue, so sorry to hear that your son may have this illness too. I can understand how you feel as my daughter has now been told after 3 years of illness that she may also have M.E.
    I agree entirely with the other poster who suggests a good therapist as well for dealing with the suicidal issues. Your son is so lucky that he has you to be able to help and guide him with getting to see a good M.E doc straight away. I dont know about the different docs as i live in the U.K, but i like the sound of Nancy Klimas, also if you say it is nearer to you then perhaps he could stay with you while he sees her? Whatever you decide the number one priority is to get him help for diagnosis/managment/treatment and support as soon as possible.

    Yes its true that there may not be a cure but its also true that many people improve, have remissions or recover. I have had a very long remission in the past to near normal functioning, and although it has been a hard slog from my last relapse 3 years ago i am gradually getting better again. My daughter is the same in that her functioning has gradually improved from bedbound to now able to study full time and have some life. I was able to live abroad, work part time and raise a family during my remmission and although it has come back again with a vengeance i still have hope that i may have more good functioning years ahead.
    You dont say how old your son is (obviously an adult as he doesnt live with you) but its worth bearing in mind that the younger the person is and the shorter they have been ill for the better the chances of a full recovery or remmission.
    Take care, Justy x
     
  6. Valentijn

    Valentijn Activity Level: 3

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    I did some more thinking, and recalled that your son also has anxiety and depression. M.E. can have adrenal and neurotransmitter components, which can cause anxiety and/or depression (in addition to many of the ME symptoms) depending on how they're malfunctioning. Has he had his adrenal and neurotransmitter levels checked? I had it done recently through a urine and spit test sent to a lab, and it cost about $220 I think.
     
  7. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I agree, neurotransmitters and adrenal dysfunction is important as well as testing for other definciencies. Illness and stress causes so many things to be low like seratonin and vitamins. Then that can be corrected. Getting things in balance helps so much!
     
  8. hensue

    hensue Senior Member

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    Alll of you have made my day! I will be honest I have him set up with a phsyc on the 18th. He put a knife to his throat and told me he could not live this way anymore. I am at home and pray he will be ok till I get back to see him so far so good. He does have anxiety and depression! I told him he has two things wrong with him and it was not rational to do what he was doing. I understand the pain I have it. When I have been in pain before severe a couple of times I felt like not living. He is not in excrutiating pain. He says he wakes up every day thinking it will be gone to day and it is not! So wouldnt you get him treatment for sucide first?? I called an intern in NC instead of GP and he is to see him sept 22. I have left a message at Dr Killmas and phone numbers but have not receive a call.
    At this stage in his life, yes he is 30 years old. No one can just say to him you know there is no cure. He has to know in time he has a chance of getting better.
    As far as the adrenals and neurotransmitters. What kind of doc?? Keep all the suggestions coming. What doc first and intern to rule things out or Cfs doc??
    If he went to Hunter Hopkins would they test him for all these things or rule others out? The neuro he went to just did a look in my eyes test. Reflex etc.
    Thanks
    Susie
     
  9. Valentijn

    Valentijn Activity Level: 3

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    I went to a naturopath for it, but chose one interested in cardiovascular stuff, since my most disabling symptom lately has been from circulation/light-headedness problems. Any doctor (even a GP or Nurse Practitioner) can order the test. You might be able to get it done privately too, if doctors are being difficult about it. But with the psychological symptoms, getting those tested shouldn't be a problem, and treating it may resolve both the "mental" and the physical problems (they're probably both really physical at the source of things).

    Counseling is a good idea too, for coping with the anxiety and depression ... meditation, etc, til things get fixed properly. Maybe for helping him realize that how he's feeling right now isn't really HIM.
     
  10. hensue

    hensue Senior Member

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    I have my son in counseling he has new symptoms muscle spasms or twitching all on left side. He says you can see them.
    Can this be from a drug he takes the generic for Celexa and Klonopin at night? Some antii inflammatory drug in the morning starts with an M and tylenol arthritis.
    Thanks all keep it coming.
    Susie
     
  11. Rooney

    Rooney

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    Dr. Black/Lapp diagnosed me after my internist ruled out lupus and MS. I'm sure the staff person you spoke to was trying to manage your expectations, not give medical advice.

    At the time, did the neurologist know about the problem with one side of the body? If not, see again.

    Wishing you the best,

    Rooney
     
  12. hensue

    hensue Senior Member

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    Yes
    The neuro did know about the pain on left side of body. She did no other testing and gave him gabapentin? spelling. He never took it and since then has started the twitching.

    All of you are so smart and this gives me courage to help him. Thank you so much for helping a tough situation. All of you know how stressful this syndrome, disease whatever to help your child ( 30 years old) but no less your child is really hard.
    I listen to all of you each and every one.

    Thanks
    Susie
     
  13. hensue

    hensue Senior Member

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    I agree the staff was trying to manage my expectations and not give medical advice. The Women was very nice and had been in this a long time only for her patients.
    She told me all about the ampligen and how much money it was yuk.
    I finally got my son an appt with an intern sept 22 to hopefully rule out these other things. I agree Rooney I am going to get him to call the neruro and the twitching and see what happens.
     
  14. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    A good Integrative MD can do these tests.
     

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