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  • #310214
    Cheryl F
    Keymaster

    So Gay, are you going to show Dr. M Susan's analysis of her study? 😀  Yes, I am kidding, but wouldn't that be nice to show her that we know the truth?

    Cheryl

    #310215
    Goodwife
    Participant

    Gay,

    Very interesting thread – just for your info and to take to your dr., my hubby's situation was not “spontaneous remission” or whatever they call it – his symptoms were getting worse  quickly, so I absolutely do not believe in a “coincidence” or spontaneous remission, based on what great strides he has made since starting AP almost 22 months ago.  Everyone on this board will agree that they saw improvements after starting AP – these cannot all be spontaneous.  Even  some “openminded' docs still have blinders on. . . it is sad.  There are dozens of people who post on this board (and a lot who no longer do) that have had great improvements, and permanent remissions from SD and other diseases, it is insulting that docs with disregard what they see right in front of them.

     

    okay, I'm done venting.

    #310216
    GayG
    Participant

    Cheryl…how can I get that analysis….I don't remember if I saw that or not or if I did it was during the time when I was sick and it may not have soaked in at the time…I'd love to look over it before I go.  Seems like I remember something being said about the fact that the study was only done for a year and that wasn't a long enough time…..I know that other people have gone before me and told Dr. M their stories of remission but it never hurts to have one more. I just hope I don't make her mad but oh well, if I do at least I had my chance to tell her how negligent I think it is to not at least offer AP therapy to patients.  I TOTALLY agree with Goodwife, there is NO way my improvements were spontaneous either….

    #310217
    Cheryl F
    Keymaster

    Gay,

    Points 3 & 4 are posted earlier in this thread. Susan completed this analysis for another purpose, but she makes some very good points.
    Cheryl

    #310218
    GayG
    Participant

    Thank you….now there's definitely a senior moment…I don't remember reading that before, show's the shape my mind must have been in back then….I copied the text and pasted it into a document to print out……I don't know exactly what I'm going to do with it…..depends on what Dr. M has to say I guess and if push comes to shove I'll give it to her….Blessings! Gay

     

     

    #310219
    Cheryl F
    Keymaster

    Gay,

    Honestly, I was not serious that you should share the analysis with Dr. M.  I am quite sure that doing so would be viewed as quite presumptive and offensive.  Don't do anything that would jeopardize your future care.  For a patient layman to show a nationally renowned “scientist” a critique of her research would most certainly be viewed as out of line.  I wouldn't want to encourage anyone to do that.  It is more of a fantasy.

    I think the information that Susan provided is so important though.  I am sure that nearly everyday, when hopeful SD patients, who have read Scammell's Scleroderma Book ask about AP, they have that study with its inaccurate conclusions thrown in their face, their inquiry is shut down and they are left to be the submissive patients that the doctors desire. 

    Cheryl

    #310220
    GayG
    Participant

    OK, I won't do it, ………but I won't be seeing her anymore after this visit anyway……I have a Rheumatologist here and I only saw Dr. M. because he wanted me to..so after this visit, just to let her see the improvements, will be my last visit with her…..I will continue to still see the cardiologist though that is a friend of hers and is on her same floor so I better behave myself because he is a very good doctor and the only one that I've found anywhere close to me that understands the effect of SD on the heart (and Houston is a 6 hour drive but worth it to have him as a dr.)…he's also in charge of my Cardia and Lisinopril so I need him……I'm going to pray about this very, very hard and I'll come away from that visit with my dignity intact BUT my point made, because I am very upset (I know we all are) about the withhholding of this medication while people are dying but if I make her mad she may think I'm a nut case so LOTS of prayer first and holding of my temper…….I'll let you know how it goes…I can just tell her how I feel, probably still won't change her mind but it'll still be worth it…Blessings! Gay

    #310221
    SusanSD
    Participant

    Gay,
        So glad you're feeling much better and I had to chuckle when you said you were seeing Dr. M just to show her how well you're doing, because I feel the same way. I see a big name scleroderma researcher/rheumatologist and I only see her to prove to her that AP works. I get nothing out of going to see her …. not even a prescription. It's a pain in the bum to get there because of the city and traffic and paying for parking but I figure I can suck it up once a year. But if I am doing this to teach her, why should I be paying for the visit?! Don't get me started on how messed up our health care system is! If you ever want the full analysis just PM me.

Viewing 8 posts - 16 through 23 (of 23 total)

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