Re: I have been so lost !!!

From: Jaynie Jarvis (hipjaynie@webtv.net)
Sun Aug 20 13:08:15 2000


At Sun, 20 Aug 2000, Connie wrote: >
>Jaynie: Hi, I am the new "anonymous" to the board, but let me tell
>you...you are definately not alone. I have a friend who is going thru
>this with me and we both contemplated seeing Dr. Cook...he was in
>Lousiana and now has moved to San Francisco...too far for either of
>us...but we are thinking of getting a plane ticket and seeing him and
>having the concious pain mapping done! We both have been going thru this
>for a number of years...if you read my post below, you will see how
>frustrated I am too! I have tried all the drugs you have...celexa didn't
>agree with me, nortriptyline didn't either...hard to function at work on
>either drug and they both made me sick. You are lucky to be close to
>Dr. Cook as I had a phone consultation with him and really liked what
>he had to say...he doesn't give up or think you are nuts!!! He was so
>nice and I met a girl on another forum who had been to him and had
>surgery. When her doctors found nothing, he did! She called him a "true
>angel"...so, I hope you get to see him. Keep me posted! Connie
>
>At Sun, 20 Aug 2000, Jaynie Jarvis wrote:
>>
>>Yes, I have been so lost, but now I am found ! After hearing from Dr.
>>Redan that he saw no adhesions in my video I was so lost. Wasn't sure
>>where I belonged and still not sure. But this forum has been such a
>>support for me and my mysterious pelvic pain that I decided I needed to
>>come back. Plus I felt guilty to not be here sharing my experience,
>>strength and hope. I had no hope for months. I just carried on with my
>>life taking my icky pain meds and dealing with the side affects of them.
>>My last DX from Barbara Levy MD was PHANTOM PAIN and that I must have
>>been PHYSICALLY OR SEXUALLY ABUSED. Then she told me that adhesions do
>>not cause pain and sent me to a pain clinic at the University of
>>Washington. I went there for a all day sceening with my husband and
>>daughter. They told me that opiates do not help " MY KIND OF PAIN "
>>Still confused what they meant by that. I think she only is considering
>>my muscle aches and pains that I think is from being in bed for the
>>majority of 2 1/2 years and 3 operations and being jacked around by
>>several ignorant doctors that do not listen. Like I have asked several
>>of them why I can't take estrogen with out it causing severe pelvic pain
>>and they just look at you like that is not possible and your nuts !!! I
>>have fired Barbara Levy MD . Untill this week I was going ahead and
>>going to pain clinic as soon as the insurance authorized it but the
>>clinic sent the paper work to the wrong address. I would hate to waste
>>$18,000 and come out of there maybe feeling better muscularly and
>>emotionly but still having my original pain. I am sure it will cost me
>>about $5000.00 or so. One reason I was excited is because I would stay
>>at the Ramada Inn for those 3 weeks all by myself . I think that sounds
>>good because then no one could see me suffer. It kills my husband to
>>watch me in pain and crying all the time.
>>
>>I have read about pain mapping alittle but was afraid of it. Now that I
>>have read more it sounds like that is what we all should be doing. Less
>>invasive so decreases the chance of making more adhesions. I couldn't
>>believe it when I read that so many women , like me, they have no
>>explanation for our pelvic pain ! It did help me feel not ALONE though.
>>My husband and I have decided to check out Dr. Andrew Cook who does
>>pain mapping in San Fran which is kinda close to Seattle WA. I have
>>also written to Dr.Sobolewski for a referral. The odds are only 10-20 %
>>of the time they find what is wrong. Or contemplating going to
>>Redan and Riech who said they would take a look for me. When I sent my
>>records to them Riech was out of town so not sure that he even saw them
>>only Redan who is not the pelvic specialist. I just wish Riech would
>>have given me his opinion.
>>See when you haven't been around for awhile you have alot to say !
>>One more thing ! Levy put me on Nortryptilene (spelling ?) for my
>>PHANTOM pain and told me to take mineral oil for my constipation. I got
>>so I could hardly walk around . All my joints hurt so bad. I would
>>wake-up in the mornings and my finger joints hurt so bad to move them.
>>So I went off the stuff and the mineral oil because my alternative care
>>person said it depletes your body of the minerals I was trying o get in.
>>( the mineral oil ) and the nortryp. is very bad for your kidneys and
>>liver. Not sure if it helped my pain much if at all. And I am working
>>on getting off Celexa , my anti-depressant, and am going to try SAM-E.
>>Which is supposed to be good for your joints and emotions. I have had
>>enough of there wacky drugs that only treat the sypmtoms.
>>Would like to hear from anyone out there in cyber land. Thanks for
>>listening Jaynie

Connie thanks for replying ! And the good news. I hate to get too excited to set myself up for disappointment. AGAIN Maybe God has lead me in THIS direction now ! Heck I don't know. Do you know what Dr. Cook found was wrong with the friend on the other forum? I thoght I read that there was only a 10-20 % chance that they will find something. Good enough for me. Thanks again, got to go to a brunch for a whie but will return when I get back. Jaynie


Enter keywords:
Returns per screen: Require all keywords: