To The Guai Ladies

Discussion in 'Fibromyalgia Main Forum' started by janieb, Sep 8, 2006.

  1. janieb

    janieb New Member

    I need to apologize for not getting back to you sooner.

    Went through the Mayo Clinic after local doctors had done every test they had for the pancreatitis. They sent all the records to Mayo before I got there.

    This is going to get long, so please bear with me.

    Doctor at Mayo was wonderful; and a very good listener. He also asked me what I thought. They did several tests and when I left the results were not all in. He has called me twice and today I got a copy of the letter he sent to local doctors.

    In the information they sent him, he found a 17mm polyp on my gall bladder. Local doctors had called it a cholesterol spot. Mayo is recommending the gall bladder be removed. Called local doctor today and they can't get me in to discuss this until Sept. 25th. They also found one polyp on the liver and two in the pancreas. Mayo didn't criticize the local doctors, but suggested they do the surgery.

    How can there be so much difference in two facilities? Also discovered that Mayo is much less expensive than our local doctors and hospitals. The local doctor was a specialist, so why didn't he find those things. My insurance company has paid many thousands of dollars for those tests.

    Guess I'm frustrated because the area still hurts, I must eat 6 meals a day and try to gain weight, but remain on a low fat diet. Then you add in the fibro and it seems never ending.

    Thanks for listening gals and being there when I need you.

    janieb
  2. Mikie

    Mikie Moderator

    I'm so sorry those docs were so negligent. At least, going to Mayo was well worth it. I guess if you can eat enough carbs, you can gain some weight.

    I am recovering from some kind of attack but the gb ultrasound showed nothing, according to my doc. I was on the bland, no fat diet and it was very boring. I missed my coffee the most. Since they found nothing in the ultrasound, I've decided to go back to my regular diet and it doesn't seem to be making things worse. Still something isn't right. Eventually, it will get better or worse.

    What do they do about the polyps on the liver and pancreas? Can these polyps ever turn cancerous? My neighbor went on the diet prior to having her gb removed and it did help the surgery go better. I think it helped with her recovery too.

    Please keep us updated. Again, I'm so sorry but I know it has to be a relief to finally know what is going on. You are in my prayers.

    Love, Mikie
  3. Mikie

    Mikie Moderator

    For our other Guai Ladies
  4. bigmh

    bigmh New Member

    Hi Janie...so sorry about your troubles! I hope that when all of the results are in, that you will feel comfortable with the decisions. Just a note...I had my gall bladder out when I was 22 (27 years ago), and didn't have the regular symptoms, but when they got in there, they knew it had to come out. It took about 9 months after the surgery before I was back to normal!

    I understand your frustration with doctors. We live in E Washington, and we have had troubles here with the local docs, too. I do have a wonderful doctor here, but for specialties we go to Seattle. I've had the same things happen with different suggestions and diagnoses locally vs. in Seattle. I understand how frustrating it is.

    Please keep us posted, and I will keep you in my prayers.

    Mikie...so sorry about your illness. You mentioned the gb diet. Are you hypoglycemic? Just wondering if you have tried the HG diet recommended by Dr. St. Amand? I am not convinced that I am so haven't really given it a fair shot. Please keep us posted on how you are doing, too.

    Well, I'm feeling a little better this morning, but have had lots of pain lately (what's new??). I am doing a blocking test now to see if I'm blocking since I've never been mapped. I'm not looking forward to feeling worse but hope that I'm not blocking.

    I'll keep you two in my prayers (as always)...thanks for your updates...keep in touch! Love and blessings, Ann
  5. janieb

    janieb New Member

    It's always so nice to be able to talk to people who understand. The weather has turned cold here, so it's a toss-up between the ache of the fibro and the pain in the stomach.

    The problem in the gall bladder was found in Eau Claire when they put the camera down and looked around. It seems to me my specialist just didn't get the results or didn't pay any attention. That was before he sent me to Mayo.

    Mikie, I had several ultra sounds and they didn't find anything until they used the camera. Sorry, but it still doesn't mean your gall bladder is OK. Wish I could say otherwise. They tell me the ultra sound finds stones, and they didn't find any on mine, either.

    Blessings on both of you.

    janieb
  6. Mikie

    Mikie Moderator

    Ann, I've been on the low-carb diets and I do try to limit the carbs but not as severely as I once did. I do think the low-carb diets help us feel better. The diet for gb is so limiting in fats and carbs. No meat, no poultry, no alcohol, no caffeing, no chocolate, and some veggies can't be eaten. Only soft cooked eggs are allowed. If one is having a gb attack, the diet does help. We still don't know what it was. Nancy gave me some good info on gastritis and that may be the problem. In any case, for now, I'm better. In fact for several days now, I've had more energy than I have had in a long time, even with the temp. The temp is gone. My stomach is still a bit upset and bloated but the pain is gone.

    Janie, I know that the normal result doesn't rule out a gb attack, so please don't feel you are the bearer of bad news :) It just means that we don't know what caused it. I am hoping the bloodwork may shed some light on things. I do find it strange that the Doxycycline killed off something, judging by the Herx. I also find it strange that I had a big abcess in the area which has drained and healed. Add in the temperature, and I suspect some kind of infection. Only time will tell.

    Thank you both for your concern and good wishes.

    Love, Mikie
  7. Smiffy

    Smiffy Member

    Sending you both a big hug & hoping these health problems can be sorted out soon.
  8. Mikie

    Mikie Moderator

    I hope you are doing well.

    This is the third day of feeling sooooo much better. I am going to go out and clean my lanai so I can put my furniture back out there. It's been inside since Ernesto was a potential threat. We don't use our lanais when it's this hot and they get filthy. If a storm didn't come along now and then, they would never get cleaned off til winter.

    Thanks for you good wishes. I appreciate it. Last week at this time, I would never have believed I could feel this good.

    Love, Mikie
  9. Smiffy

    Smiffy Member

    Glad you're feeling a better Mike. Hope janie & everyone else is too. What's a lanai please? Is it a balcony?

    I'm moving house in a couple of weeks, from temporary rented into the bungalow we're buying, so that will be exhausting. I'm hoping to set one room up as an art studio to use an hour each day (wouldn't have considered it before Guai, I was in bed all day).

    best wishes to you all
  10. janieb

    janieb New Member

    Local doctors forgot to put the decimal in the polyp, so it's really 1.7 mm instead of the 17mm they told Mayo Seems surgery isn't the answer, so we'll be trying every kind of medication available until they find one that works and I'm suppose to gain weight on a low fat diet with a stomach that hurts every time I eat something.

    Going to go out and look for a big chunk of ice in Alaska.

    janieb
  11. Smiffy

    Smiffy Member

    How are we supposed to trust doctors who can't even cope with decimal points? Hope you can find something to eat janie; can you manage one of the invalid drinks (it's called Complan over here)?
  12. Mikie

    Mikie Moderator

    Good luck on the move. Please let us know how it goes.

    The word, lanai, is basically only used in FL and Hawaii. It can be a patio or a balcony. Here, they are sometimes called, Florida rooms, if they are large enough. Most are screened in but they can be glassed in too.

    Again, good luck with the move.

    Love, Mikie
  13. Mikie

    Mikie Moderator

    This is good news. Best of luck with the treatments. I just went through the gallbladder diet during this last attack of whatever it was. There wasn't a whole lot to eat. I hope you can stablize things and gain the weight you need. Keep us updated.

    Love, Mikie
  14. painintheeverywhere

    painintheeverywhere New Member

    Janieb I remember my mother going through so many expensive specialists, tests and hospital visits. My father had his own business and only carried hospitalization and in the end, my mothers medical care including meds came to over one million dollars, which put them in a position of doing very well, to almost having nothing financially. My father finally insisted that my mother go to Mayo Clinic and had to fight the insurance company to do it.

    The appointment at Mayo helped my mother immensly, but not until so much damage had been done that should have been caught by these very high paid specialists in Denver. They found medications that at least put my mother in a more comfortable state. Not one of the doctor's ever suggested she had FM, but now that she has been gone for six years, and through all my research and illness - I am absolutely certain she did! I don't think many were open to the idea of FM back then and she had a multitude of other health issues.

    I would absolutely take the advice of the Mayo clinic. If your local Dr. is not open to following through on their advice, I would find a better Dr. even if it means driving an hour to get to one. The polyps found worry me and if your Dr's didn't even find them to begin with, then I am not sure I would trust their opinions further.

    I hope you consider a new Dr. or at least another opinion to your local Dr's non-surgical approach.

    Good Luck and Prayers to you and Mikie

    Jane
  15. janieb

    janieb New Member

    Called Mayo and am waiting for a reply, just to make sure he agrees with the other doctors. If not, I'll be heading for Rochester. They're quicker, better, and cheaper.

    Blessings,

    janieb