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dr benjamin natelson

Discussion in 'ME/CFS Doctors' started by Pink, Feb 12, 2018.

  1. Pink

    Pink Senior Member

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    Tri state area
    I looked at the treatment roadmap and at the list of suggested drs, and I don't see Dr Natelson listed on either.
    Is there a reason for that? Has anyone seen him, or know of his protocol?
    He is very expensive, but he is not that far so I wonder if he's worthwhile to see.
    His website doesn't have much information, other than a video that i cannot open.
     
  2. Silencio

    Silencio Senior Member

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    I have seen him. He’s fine in that he understands the disease and will try a bunch of drugs for you if that’s what you want to do, or the point that you are at. He’s also a good doctor to have on your side for disability claims or SSDI applications. He’ll write good letters.

    But, I found his manner to be a bit paternalistic, and I basically disagreed with his approach.. the stimulants he wanted to try (why would anyone think stimulants help our incredibly sensitive to stimulation nervous systems?).

    He’s a proponent of exercise, but in a very safe way. Ie. Walking the minimum you can (a minute or whatever it might be) and increase by 15 seconds a week. He fully believes this works to expand the energy envelope. Having tried it multiple times, it didn’t work for me, although I think it is worth trying.

    He’s very anti antivirals, so if you want to try those, go to Levine instead.

    Something that grated on me.. I was taking part in an MRI study he was running, and he tried to persuade me to do a spinal tap. He was very forceful in trying to persuade me, saying all patients should do whatever they can to contribute to science. I told him I was living alone in a walk up apartment and couldn’t risk getting worse — that made no difference. (This is what I find w doctors who are also researchers — they sometimes put their research before their patients). The technician who ran the study at the hospital said absolutely do not do the spinal tap, when I told her my circumstances, and she was shocked that he had pushed for it. (Spinal taps are mostly safe, but there is risk of a spinal leak which is very disabling in itself)

    So, I guess my advice would be to see him if you need a doc on your side, but be skeptical and make your own choices about what is right for you.

    Oh, one last note — his office is quite a walk down corridors to get to, if you have a low step per day limit.
     
    pattismith likes this.
  3. Pink

    Pink Senior Member

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    Tri state area
    Thank you , @Silencio For your reply.
    Ugh I hate condescending Drs! (I was looking at old medical records & I remembered when a neurologist at nyu told me years ago that they only understand 10% of the brain's functioning, but he will attribute my fainting spells to anxiety)
    So other than stimulants, which I have no interest in, what type of medications does he try?
    I already had an mri, and I don't see the value in a spinal tap.
    What does he think will help cfs/me? Just stimulants & excercise?

    I cannot do any excercise some days I can't even walk from bed to the bathroom.
     
  4. Silencio

    Silencio Senior Member

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    He has a book that outlines his approach called “Your symptoms are real: what to do when your doctor says nothing is wrong”

    He mostly tries to address pain, sleep and depression issues with the current drugs available, none of which I was willing to try (lexapro, gabapentin) or had already tried (amitriptaline, trazodone) and had terrible side effects from.

    I think he tries his best with a limited arsenal of tools.. He might be good to have a history with if NIH ever does clinical trials bc he feeds patients to them and CDC.
     
    Pink likes this.
  5. Pink

    Pink Senior Member

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    Tri state area
    Thank you, @Silencio , I don't think he's the right fit then for me at this point.
     

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