# medical testing anyone?



## LoriAnn (Jan 31, 2002)

Hi everyone, its been awhile since I posted. I have been dealing with a lot of health issues, and been in and out of the hospital. I was diagnosed with FM in 92-93. In the past year things have deteriorated so badly. Our health care system is a shambles and I have had to do a lot of my own research. I don't know if I ever really had FM and at this point I don't believe I should trust any doctor, they messed things up so much for me.It seems I have Celiac disease, not IBS as I was told years ago, and I have endometriosis which will require me to have a complete hysterectomy in the next few weeks.I was wondering how many of the people on the board had extensive testing before being diagnosed with FM, CFS, or IBS? I was diagnosed with FM & IBS with nothing more than xrays having been taken. Its my understanding that these 2 conditions are determined when everything else has been ruled out. In my case it was their first conclusion, nothing was ruled out first, if it had been I wouldn't be in the mess I am today.In doing research I found MS, FM, CFS, Celiac Disease and Endo all share similar symptoms, they are all autoimmune disorders/diseases so without definitive testing how does a doctor determine which one(s) we actually suffer from? I belong to message boards for all of them, its amazing that 50% of each board also suffer from IBS. The other surprising thing is that in the case of MS, Celiac Disease and Endo, is that in all three conditions lesions can appear on the brain, (I don't know about FM or CFS-can someone clarify this for me)So if lesions appeared in an MRI,how would a doc decide which condition I suffered from? FM symptoms are remarkably like MS symptoms. There are some tests for MS, but they still do not prove or disprove if a person has it, it still requires guess work on the part of the doc. I am so confused. I haven't figured out if my CD is causing FM symptons or I have FM on top of everything else, but the more i research the more convinved I become that there is a connection here. Three autoimmune conditions with very similar symptoms including IBS? I was even amazed to discover that the drug of choice for MS is often amitryptilene(sp), and it is also a very popular treatment for IBS.Could anyone add information about their own experiences/testing? I would appreciate it.Lori


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## squrts (Aug 14, 2000)

hi lori,good to see you!sorry your having such troubles,but maybe you`ll narrow things down a bit.maybe even get well!i`ve had so many tests thru the years i dont really remember which was for what.my psych doc was worried about MS and ordered tests that elimited the possability of that disease.whats causeing the D,crohns or IBS?i dont much care.and the endo i dont have to worry about,at least not for me.i wish i could help,but i dont know the anwsers to your questions.i really dont think the docs do much more than guess either.good luck.prayers for your upcomming surgury.


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## Feisty (Aug 14, 2000)

Hi Lori!I just e-mailed you, concerned about you and wondering what was going on.I know the thought of a hysterectomy might be scarey---it was a life saver for me. I told them to take the ovaries, too. I didn't want them to have to go back in there in another year or two and do that. As it turned out, the ovaries didn't look the greatest either, so they took it all. I had endo, besides bacterial uterine infections---non-stop---and finally told them I couldn't live like that any more. The Gyn agreed and did the surgery. I know your health care system up there isn't the greatest. Is there any way you can go somewhere (thru help from hubbie's employer, maybe) so that you can at least feel a little more at ease about some things.I also know that there are a lot of people out there that have Endo and the Endo can also grow and adhere to the outside of the uterus and thus adhere to the intestines and cause a lot of problems.I believe wholeheartedly what you say that there is some "connection" somewhere with all these conditions and the medical profession is missing it---big time.My best to you. Keep us informed as to when and where you have your surgery.Sending my love.  Karen


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## Paige (Apr 4, 2002)

Compared to everyone else I seem to be doing everything backwards. I had a hysterectomy 7 years ago having been told I had endo some 7 years prior to that. I kept putting it off but that surgery was the best I have ever had. My life is so much easier! I couldn't deal with that on top of everything that has come since.I was diagnosed with IBS on symptoms only some 6 years ago. I recently had a colonoscomy and the docs says I don't have IBS. Funny, I have all of the symptoms.I was diaagnosed with B12 deficiency (megoblastic anemia without the anemia part) 2 years ago. during this time I was tested and continue to see the neurologist every 6 months for an MRI to keep the MS diagnosis just at "possible."The SFS and Fibro came just about a year ago and was diagnosed on symptoms and trigger points. ALL of the symptoms overlap. I have said for years that I am a forerunner of what happens to people when long term antibiotic use screws their immune system. Currently I am trying to figure out where the abdominal and stomach pain is coming from. I had a small bowel CT scan today which follows the abdominal and pelvic CT scan I had a month and a half ago, followed by the colonoscomy and endoscopy. Check with your doctor and see if they can do your hysterectomy vaginally. Very little recovery time! Schedule the surgery...you will be glad you did.Paige


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## SLBEL3 (Jun 1, 2000)

Hi lori. Boy can I relate. I have IBS-D, abdominal pain, FM and MS. Plus I have had 2 strokes. The only difinitive test they can do for FM is trigger point checks. You have to have pain in a minimum of 11 out of 18 points. Your doc can do the check for that.Also I had endo and adenomyosis so I had to have a hysterectomy last year. They took the uterus, fallopian tubes, cervix and only one ovary. They didn't want to take both because they didn't want me going through menopause at 29. Especially since I can't take HRT because of the strokes-too high risk. But because of that I am now once again sufferring from endo and adeno but instead of it being in and out of my uterus it is attatched to my colon and kidneys. Which is definitely not helping the ibs. Need to have last ovary out but don't want to do it in the summer.I did have extensive testing for it all. CT's, ultrasounds, laparoscopies, barium enemas, colonoscopy, sigmoidoscopy, xrays, etc, MRI's, spinal tap, amongh the few.Good luck to you.


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## LoriAnn (Jan 31, 2002)

Thanks everyone for your answers!Hey denny, I know you can't have endo, as you lack the proper equipment, but as for the rest, its all possible. Have you had a spinal tap and/or MRI to rule out MS? Or a small bowel biopsy to rule out celiac disease?All the testing I have had done was vague & pointless in my opinion. Xrays, an endoscopy, bloodwork. Thats it. Oops, I had an abdominal CT, I was on the table 2 minutes (I'm being generous because I only held my breath once and I'm a smoker), and it scanned a very small area, the table never moved. I called other hospitals after which all said my CT was inadequate and I should not trust the results. There have been No laps, no MRI, no barium enema, or any other test for my IBS, FM or endo diagnosis.As for the FM point test, my doc did do the test, but he was off about an inch in each area so he determined I had an FM "type" syndrom. I think he was off because he didn't know what he was doing.Paige, when you go for the endoscopy please ask the doc to do a biopsy for Celiac disease, it is much more common than most doctors realize, (1:250 people) and B12 deficency is a common symptom of CD.Karen, paige and Sandi, thanks for adding the info on endometriosis. I should also clarify in case it wasn't mentioned, that as long as we are getting hormones, endo can come back. A lot of people who have a hysterectomy don't realize that and wonder why they are having pain again after a few weeks or months.Paige I hope you get some answers soon, also, I've never taken long term antibiotics, even in the short term, after 2 days, they hurt my stomach so much I usually stop taking them. And Sandi, I'm sorry that you have had such a tough go of it, 2 strokes on top of everything else! And now you have to have the other ovary removed...thats why I want it all out in one shot, no going back the second time. My husband and I discussed the advantages and disadvantages of doing it vaginally. We are going for the abdominal hyst. My uterus is likely fused to my bowel, if it is then they will have to stop the vag surgery and go through the abd anyway. I have a very enlarged cervix (about the size of a coffee mug) and we decided they should have a good look around inside to see how bad the endo is, since the pain goes all the way to the illeum, it is worth the extra recovery time, and pain, to have them do it right the first time and remove as much endo as possible. I'm no expert on the subject, but we tried to do a lot of research before making our choices.Sandi, how do you feel you will manage without HRT when you have the other ovary removed? Good luck with it and please let me know how it goes.You have all been very helpful, thank you. I hope others will add to this post. I think if Docs were to hang around message boards like this, they would learn a lot more than they are with their smug attitudes in their corner offices.Lori


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## carolauren (Mar 14, 2002)

Over the years, I have had tests to rule out other things besides IBS--gall bladder, upper and lower GI series, occult blood tests, and finally, colonoscopy. Have not been tested for parasites, celiac disease, H. pylori, lactose intolerance, or food allergies/sensitivities.My endometriosis was definitively diagnosed by laparoscopy, after an ultrasound showed a mass in my abdomen. The mass was not evident in the lap; gyno doc said it was probably swelling that showed up on the ultrasound.


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## squrts (Aug 14, 2000)

i have crohns,ive had more bowel,small and large,biopsies than carters got liver pills.weather they would have looked for celiacs i dont know.i had MRI for MS.gasgirl,OCCULT blood test??


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## LoriAnn (Jan 31, 2002)

Gasgirl, the tests they didn't do are important ones, if your doc won't do it, there are some private labs in the US that do, I can find a site for you if you like. In spite of all the probelms I am still having, the CD diet has made a big difference, its stopped the insomnia and IBS, which is important enough for me to stick to it. Food intolerance can play a big part in how we feel, I'm just sorry I didn't know that 10 years ago. But its tough figuring out what bothers you when there are 40 ingredients in a can of soup, for example.Have you had surgery to remove the endo, or had a hysterectomy? Or been prescribed a Gn-rh? Is the GYN doing anything for it? How could a doctor miss a "mass" in a lap? The more I ask questions, the more I learn.Thats the strange thing. Have you ever watched a movie where a girl hears something in the house, but instead of leaving, she starts looking under the beds and in the closets? And all the time you are thinking she is an idiot and that if it was you, you would get out of the house. My questions are like that, ignorance might be bliss, and the answers won't solve my problems, but I have to ask.(or look under the bed)Thanks for your responseLori


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## Feisty (Aug 14, 2000)

Yep, Lori, Keep asking those questions and looking under the bed---we all learn from others questions and answers and yours' are always interesting and hold a lot of merit. What a researcher you are!!!


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## carolauren (Mar 14, 2002)

squrts,Occult in this sense means blood that is not visible to the naked eye; you have to take a series of thin stool samples and put them on cards that get sent to a lab. It checks for bleeding in the intestine. I did this annually until my colonoscopy since there is colon cancer in my immediate family.Loriann,My history doesn't suggest most of the other tests would be worthwhile. For instance, I've eliminated both wheat and milk products for months at a time and no symptom change. Parasites would be unlikely as well. The only one I have considered would be allergy and/or LEAP testing, but Lotronex virtually cured me, so I tend to think food isn't the big culprit in my case.My endometriosis has been asymptomatic for over 15 years now, don't know why. The doctor didn't miss the mass during the laparoscopy; it just wasn't there. That's why he said the ultrasound probably was picking up some swelling from inflammation on the day I had it done.


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## Paige (Apr 4, 2002)

I forgot - with the hysterectomy I just had the uterus and tubes. Even at 38 they wanted to leave my ovaries. I have problems with the ovaries misfiring a little in the last year. My gyn (woman) said they still are working, but occassionally send an overload of estrogen into my system. It cause my breast to go up a cup size overnight and because I have breast tissue scattered from my underarms practically to my waist I had extreme pain in the underarm lymph nodes. The pain went away, but not the bra size! How weird is that?Paige (45 and no sign of menapause yet)


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## Feisty (Aug 14, 2000)

Paige,Larger amounts of Estrogen can cause your breast size to increase---permanently. Mine did. Went from a B to a C to a D to a DD to a DDD and overflowing and finally couldn't stand the back and shoulder pain. This was at the same time that the Doc was screwing around with the dosage of Estrogen and I finally said---HOLD IT---I feel like ####, I felt sick all the time, like I was coming down with the flu everyday and I insisted on trying a different kind of Estrogen replacement. I tried the Climara patch for quite a while, but with the exercising, swimming, working, and tub soaking, etc., I was sweating them off too easily and had to apply a new patch every third or fourth day, so the insurance said---no more---find a new one. I'm now taking Menest (plant derived) at 0.625 mg. and it takes care of most of the hotflashes, etc. A year ago, my Gyn also started me on Vagifem which is a tiny white "pill" of Estrogen that is inserted vaginally and it has helped tremendously with the vaginal dryness and burning.After the Estrogen was regulated to a comfortable dosage, I decided to see my Doc about breast reduction. Both my primary care and a plastic surgeon recommended a breast reduction and that it was medically necessary. It took about 4 months or more before the medical insurance would okay it, but I have never regretted having it done. That was 5 years ago. I'm back to a comfortable "C". And never again will I allow them to "overload" my system with Estrogen. My hysterectomy was done 10 years ago and they took everything. I'm so glad. I'm 53 now. One Estrogen replacement that I would recommend staying away from is Premarin----it's a bad one and very hard for the human body to utilize properly and besides that---it's made from horses urine!!! This was the one I was put on when I first had the hysterectomay and it's the one that made me feel sick all the time and caused all the "extra" breast tissue growth. It's one of the side effects of it!!Hope this helps.Karen


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## LoriAnn (Jan 31, 2002)

Hey everyone, I just spent another 2 days in the hospital and was fortunate (or unfortunate) enough to go home with a prescription of morphine. I'm really starting to hate my life.Thanks for posting this info Karen, I could use the increased breast size, hubby would no doubt like that side effect...lolAll these posts will help me make important decisions when the time comes.LoriAnn


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## Feisty (Aug 14, 2000)

Well, Lori,My hubbie was indeed disappointment and upset when I chose to have the breast reduction. He's one of those "big boobs" fools and I told him, tough luck. I was not carry tht extra weight around anymore for his "enjoyment". Told him to straighten out his head a little bit------he didn't know what to do with what he had all those years, so what was it going to matter if they were smaller!!! LOL. After the surgery, I put a 3 lb weight in each of his hands and told him that's how much "excess" was removed. He couldn't believe they were that heavy before the surgery. 6 lbs. of boobs I lost. Best thing I ever did!!!!


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## squrts (Aug 14, 2000)

are you ok how lori?hospitals,ug!i actully enjoied my first stay,hate em now.thankfully i havnt had to stay in 13yrs.aint a dang thing wrong with small breasts.karen,he wouldnt learn the massage,why would he care about how much boob you had to carry?or am i making a bigger orge out of him than is fair?


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## LoriAnn (Jan 31, 2002)

Thanks Denny, you made me smile, and it takes a lot to do that these days. I feel like I am at deaths door and I wish it would just open and let me in. I can't think straight, can't function, with or without the morphine. I am very, very ill. I never thought I would admit to feeling that bad, or totally giving up, but I'm there. The reason for sending me home with morphine was to see if I could get through the weekend without having to see the surgeon on call, both my doc & I agree he is an idiot, the surgeon who is on Tues morning is a much better doc and the head of surgery. They think maybe I have stones caught in my liver, left overs from my gallbladder and a condition that can be caused by Celiac disease. So I will have to have that operation as well as a hysterectomy over the next few days/weeks.I was told that if the morphine doesn't keep the pain under control til then to get back over to emergency and they will keep me until the operation(s). I have suffered through a lot of things in my life, but I have never had to survive anything like this, and i am way beyond depressed.Sorry to go on so much, and thanks for asking Denny.Lori


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## Feisty (Aug 14, 2000)

Denny.You made my day as well! Thanks for giving me the only smile out of this whole miserable day.














You hit the nail right smack dab on the head!!!!!














Lori,Hang in there! And keep us posted. We're all here thinking of you and wishing you the best. And.......a speedy recovery!!!!


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## squrts (Aug 14, 2000)

((((LORI))))


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## Susan Purry (Nov 6, 2001)

Lori, I'm sorry you are feeling SO rough at the moment. I hope that in time this will pass.To answer your original question, I have never had any diagnostic tests for IBS or to rule out other GI conditions. I was diagnosed about 10 years or so ago by a doctor I was seeing for the M.E/CFS. IBS symptoms are a common part of the M.E/CFS so he told me that the stomach pains were 'IBS' which is part of the M.E/CFS. Years later I'm too scared to have any internal tests and I don't think it's necessary for me to be tested for other things like Celiac or lactose intolerance. With the M.E/CFS, over the years (I've had 2 relapses with periods of total and partial remission inbetween) I've had a ton of blood tests to rule out other conditions such as autoimmune diseases (this is done once a year or so because my mother has SLE), thyroid conditions etc etc. Just the standard ones which should be done at the start of considering a diagnosis of M.E/CFS. As yet, we do not know that Fibro or M.E/CFS are autoimmune disorders. But we do know - in CFS at least - that the immune system is in overdrive. We just haven't seen any evidence or markers of it attacking the body like in autoimmune diseases. The immune system seems to be the key to a lot of things doesn't it. I think at this stage the diagnosis is made on based on symptoms once all the possible tests have bee done. There are key features of MS that are not seen with Fibro or CFS, these are attacks of severe pain and loss of vision in one eye, according to Dr Charles Shepherd of the M.E association (M.E is the term often used in Britain for CFS). Although I have had attacks of severe pain so I don't know how we figure that one out. To answer another of your questions, yes, there are abnormalities on MRI scans of people with CFS. Dr Shepherd reports that there are small lesions in the brain which are called Unidentified Bright Objects,in MRIs of people with CFS, which a study reported are 'consistent with inflammation or demyelination (loss of the protective sheath that surrounds a nerve cell)', which is 'very similar' to those abnormalities sometimes found in some people with MS or who are HIV infection which affectes the nervous system.(References to Dr C Shepherd come from his book called 'Living with M.E'.).


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## LoriAnn (Jan 31, 2002)

thank you for your input susanlori


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