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Discussion Starter · #1 ·
OKay---most of you all know the story--I have IBS. Yadda Yadda...anyway, about three weeks ago you all may have remembered I posted about some pains I was having that I was unsure of and the common "diagnoses" here on the board was just a bad case of C. ANYWAY--I had notified my doctor because I was in LOTS of pain. SO he set me an appointment for three weeks later--let's all skip to today (three weeks later). I go to my doctor's appointment and after waiting thirty minutes to actually get back into a room and then thirty more minutes for him to actually come in the room...he doesn't even touch me. He sits on his little stool and tells me that he didn't want to tell me this over the phone because it might be perceived the wrong way but I don't need to call and report when I'm having pain. He told me that I had gone through a series of tests given by him and my previous gastro doctor (like I dont know this) and that they have ruled out everything that it is not. I, indeed, have IBS or spastic bowel syndrome and it is incurable. I am going to have pain and that's all there is to it. He upped my dose of Librax from three times a day to four times a day and told me if that didn't help he wanted to send me to a psychiatrist to be evaluated for mental problems, and I just might need to be on an antidepresant or anxiety drug. (PLEASE!) Then he said he would see me in three months and let me go. THe man did absolutely nothing! And I payed him $20 to do absolutely nothing. I want to switch doctors but I dont know how to go about it...I dont want to sound like a whiner but I don't like the way this guy is treating me now....any comments? Suggestions?
 

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Definately sounds like a new dr. is in order. There are medications you can take for the pain. I take levbid, others take bentyl. I am surprised he didn't offer one of these medications. I find that since I am a woman, that I prefer women doctors. All the men dr's I ever had talked down to me. Poo poo'd the symptoms and made me feel like a head case. I have a woman dr. and I am much more at ease with her. My gastro is also a woman. All you have to do is look in the phone book, find one you want to go to and have your records transferred there. Easy as pie. Good luck. dianne
 

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Heather, just wanted to let you know that I feel what you are going through. Two questions, first, have you been tested for endometriosis and second, have you heard of Zelnorm. I am having a laporoscopy in a few weeks to see if there are fibroids or whatever causing the severe pain. I am currently taking Zelnorm and am having BMs fairly regularly. However, I still experience the spasmatic pain - wakes me up from a dead sleep and stays for hours. I don't get it either, this can't be a dead end.
 

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Heather, since I just traveled the underworldof doctors who wanted me to see the psychiatrist for my chronic pain, I have this to say......COMPLAIN!Be loud and angry and call the insurance provider and tell them that your very real pain is not being addressed. Rattle the patient rights thing around and watch and see who jumps.I had to do that more than once on the way to finding my answers and keeping myself from a heart attack from all the pain.Kamie
 

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Heather,Kamie is absolutely right. You know the old saying "The squeaky Wheel". In these pays of HMO's and PPO's and all the other O's its sad but true that you have to be a real Bi***.
The only thing that really works on my severe attacks of pain is codeine and tylenol #3. I take it only when I have to because it can cause constipation. I've never had it do that to me because I only take it occasionally and never 2 days in a row. I hope you get some help soon because it seems like when you are feeling helpless the pain gets more intense. Good luck to you.
 

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I use the ER for pain control when it gets bad.But then my pulse flares and I go into tachycardia and they put you on an I.V. real quick when that happens. My Internal med doctor said that she will call ahead for me in the future.I also get urine shut down when I spaz bad so really the hospital is safer for me and my condition.Kamie
 

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Discussion Starter · #7 ·
Thanks for all the replies. I was sooo mad yesterday I could hardly see straight. I forgot to mention this part of it and I'm sure you all will get a good laugh out of this one. I also discussed with my "doctor" that I was concerned about my weight gain with eating as little as I do. I didn't discuss this yesterday but he brought it up when he was talking about sending me to a psychiatrist. He was telling me that I had to be eating more calories than my body could handle and that was why I was gaining weight. He asked me how many calories I was eating and I was like I dont know. I told him most nights I dont even feel like eating because I'm so nauseated and dinner is usually the only meal I eat, if I eat at all. I found it kind of funny he even brought this up seeing that from the last time I was at his office in February to yesterday my weight had only gone up 3 pounds...and your body fluctuates two to three pounds a day anyway--so whatever...But to answer your questions, no I haven't been tested for endometreosis or whatever. What is that? And regarding the codeine and tylonal #3, my old gastro had me on darvocet as needed and this dodo put me on Ultram as needed which is fine. He said that if he put me on a narcotic I would be addicted within three months and it wouldn't even help the pain anymore...He was a really good doctor the first time I went to him...I just really don't know what happened...and I REALLY don't want to go back. My husband thinks he's an idiot at this point and my mother says I'm just over reacting--of course she says that if I just watched what I ate I wouldn't have tummy aches all the time ... UGGGG! Anyway---sorry I vented more...maybe I'll try the female doctor approach--just have to go through my health care book and see who's in it.
 

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Yea, I forgot about that ppo/hmo stuff. I also have to find someone on the "LIST" Just a thought, If everyone has a ppo/hmo, then why aren't all the dr's on these lists? huh?
And again I'm with you on the weight gain with no apparent change in diet. I have been having that for some time. And, I hate to say this, but your mother may be correct in saying to watch what you eat. Certain foods do trigger pain. I can't do fruits or veggies or milk products. Dianne
 

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HI HEATHERundertheWeather:
feel bad for you BUT this is not the end but merely the beginning. Alot of people have been in this place and overcome it to live much better lives. My comments as succinctly as possible would be: __________________________________"I, indeed, have IBS or spastic bowel syndrome and it is incurable. I am going to have pain and that's all there is to it." __________________________________Interpretation: " I have done every "test" I know to do and have reached the limit of my personal knowledge. So if I remain the only doctor on this case what I tell you next is the very best you will ever be able to get from me."If your car is belching smoke and a mechanic tells you he could not find whats wrong, so you just need to accept that your car is going to smoke, would you go to another mechanic [he asks rhetorically
of course you would]. _________________________________"He upped my dose of Librax from three times a day to four times a day ........" _________________________________Interpretation:"This is all I can think of as I have no idea how to instruct you on any dietary therapy to help with your painful chronic symptoms." ___________________________________"...told me if that didn't help he wanted to send me to a psychiatrist to be evaluated for mental problems, ...." ____________________________________Interpretation:"I read in the literature that IBS patients need psychotherapy for their symptoms or antidepressant therapy. Here I will prove it listen to me:" ____________________________________"I just might need to be on an antidepressant or anxiety drug." ____________________________________Interpretation:"See? I read that in an article too, research funded through an unrestricted grant from [insert drug company name du jour]". ___________________________________"Then he said he would see me in three months and let me go." ___________________________________Interpretation:Bills on "fee for service basis" or there is a PPO plan involved.Seriously, taking tongue out of cheek, this is just a reflection of most of how these symptoms are approached at this time. It IS a difficult trick to rule out all the possible causal basis for these symptoms. It could be several treatable things, and it might be that it is that mysterious " c and pain IBS" stuff which is so far tough to isolate the exact causal basis for it.So the first step IS to get a second opinion ASAP...and indeed endo could be on the list as was suggested.On the other hand if it is not, the literature does show that persons with the symptoms associated with the "c and/or pain" ISB subpopulation ARE symptomatically treatable.The best approach is multi-modal. You need a doc experienced in that. Multimodal means that they would assess whether CBT or HT would be indicated, and a dietary plan designed to ensure you are getting adequate soluble fiber intake and balance with insoluble fiber was being followed...this takes experimentation to see what you tolerate...what helps make things "easier to move along"....and indeed as an adjunct for this symptom set along with the behavioral therapies LOW DOSE antidepressant therapy MAY also be helpful. This form of integrative therapy, assuming ALL causal basis has been ruled out, is at this time about the best approach if a person does have the c-pain combo_One thing that bugs me is whether you really do have a pattern of c, or if your only symptom is just chronic abdominal pain. Also what are the constitutional and systemic symptoms, if any?I really feel that it is time to see another doc...how you go about this depends upon what6 the procedures are within your particular group insurance plan.Since he charged you $20 sounds like a copay to me not a cash patient, so the first step is to discuss it with your insurance company...what procedure do they want you to follow to get a second opinion and get it paid for.BUT before anyone can advise you on what treatment plan to follow more info about you would be needed. what is here is not adequate to give such advice, especially for self-treatment, as we have no HX, physical exam, what tests were done..etc. No data. Doc has that.Lastly, while we have ALL experienced the frustration of doctors not being able to provide solutions to our problem, we do need to remember that these are people just like us...frail human beings that is all, but with a lot of education and a lot of knowledge and an innate desire to work at a very tough job to make a living helping people. And like any profession there are always limits to what any single person can do, and limits as to how good anyone's interpersonal skills are.So while we may bemoan the inability of any given doc to give us a good answer, we must temper it with the realization that he is probably doing the best he knows how to do. NO ONE can know EVERYTHING about ANYTHING no matter how much they study. Also it is not good-medicine-speak to talk to patients like you would talk to your peers ["Man, Bob, this case has me baffled!"]But please do seek out another opinion before deciding what to do. It could make all the difference in the world.
 

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OH MY GOD ! Thank God I stopped listening to the Doctor's that said I need to talk to a psychiatrist...I would have had those psychaitrist so screwed up by the time I had left the office they would have had to go home early
..I get really upset that people suffer and then they want to send them to a psychiatrist....I went through this for many many years...
 

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I'm currently seeing a psychiatrist
"for Meds" only & seeing a person who is a LCSW for counseling for my IBS which is causing a great deal of "anxiety & panic fellings" and I feel it's not helping at all. I'm seeking other means to help me with this my IBS. One is getting a personal coach from the Midwest Center to help me with my anxiety & panic attacks. And 2nd checking the IBS BB on reg. basis for advice.
 

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Part 1Hello everyone, I am reading the responses here and there are many good thought.However, at this point I have a request.It's a request that might seem a little neurotic or as if I ma wearing my feeligs on my shirt sleeves, but never the less, it's something that feels important to me so I will speak.If what I say here is inapproprite, I give my aplogies beforehand. Feel free to pull my post at any time if my feelings on this matter are not to the guidelines and rules of this forum.There was a comment made in a post that makes me cry."One thing that bugs me is whether you really do have a pattern of c, or if your only symptom is just chronic abdominal pain. Also what are the constitutional and systemic symptoms, if any?"In that statement here's my sorrow"if your only symptom is just chronic abdominal pain"I know it is difficult for some people to understand but please, please, as we are responding to women in pain Please, never say"if your only symptom is just chronic abdominal pain"That is a very hurtful and upsetting statement because that's what our Doctors say to us about our pain. Our very very real IBS inclusive pain.If one more person tells me ever again that my pain is JUST chronic abdominal pain, I'll probly break down in tears and weep for a week.I was told those exact words last year.I began my journey fo find the source of my nausea and my vomiting and my chroinic pelvic pain and the pain that shot down my leg when I passed my bowels and the pain that shot up to my head and gave me blinding mirgraines with aura and vomiting and all for many many days in a row, and the progressing pain that left me unable to eventually even just sit on my horse without a daddle because riding eventually became impossibe, and the pain that took me out of my favorite pass time of scuba diving the beautiful legendary springs in Florida and left me watching HBO in a hotel room while my husband got to go with friends to do a great river drift and the pain that got so bad that before my hysterectomy I could not put on my gear and go to visit the underwater cavern that was my place of mystical reconnection and the pain that brought me to the point of not being able to have sex with my husband and left me waking up in a violent spasm that left me with no recourse but to stand in the shower and wretch and urinate all at the same time while the spasm played on.With women, it is a hurtful thing to call their pain JUST chronic abdominal pain.It took me 5 doctors and 6 months to finally have the surgery I needed.A hysterectomy was offered to me almost as a punishment for having JUST chronic abdominal/pelvic pain.I was told that if yanking out all the plumbing didn't do the job for my whineyness that I was going to be sent to the pain clinic and the psychiatrist.Oh yes, and That Doctor was a WOMAN!!!!!!!!I left one MAN doctor(gynecologist) because he said that my rectus abdominus was tight and maybe I had a bit of a bladder spam going on and that I was to take some Detrol and come back in a month.But the women doctors actually dismissed me at one point and told me that they would not give me anything for my pain until I could get the colonoscopy done, because my simple JUST abdominal/pelvic pain was NOT a gynecology problem.Even after the ER doctor who treated me the next day after the violent spaz incident said that he thought I had a Uterine Fibroid Tumor,the Gyn Women still doubted my complaints because nothing was showing on their Ultra Sounds, both internal and external and nothing, including the special test for endometriosis didn't show anything positive.
 

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Part 2Endometriosis is a condition where the endometrium, escapes frm the Uterus and runs amouk in the open pelvis and attaches itself to organs and creates a whole bad situation in the pelvis because endometrium is reproductive material and it's job in life is to attach and grow. That's way supports babies in the gestation process. So when it escapes from the uterus it still does what it has the nature to do so it attaches and grows and grows and grows and if left to it's own devices long enough it can even travel up to the lungs and when it gets bad it fuses the internal organs together and then you get a situation like mine where the colon was being fused to the ovary and the fusion had been going on for so long that both the ovary and the colon were fusing to the musculature of the pelvic girdle.
 

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Part 3So anyway, all my tests came back showing nothing but when I went to the the gastroenterologist because the gynecologist had decided that my pain was a gastro problem because I had a lot of gastro symptoms, the gastroenterologist told me that I didn't need a colonoscopy because my problem was adhesions and they simply could not see those adhesions with most imaging techniques and that the only real way to know for sure was to have the gynecologist go inside of my pelvis and take a look around with a laproscope.But, he did say that he's do the colonoscopy to satisfy any one and that my age 46 was a factor and my grandfather having colon cancer at 80 would justify the test.So we did the colonoscopy in January and while I was sleeping, the doctor told my husband the same thing he told me about the colonoscopy. So then it was still until APRIL that I had to fuss and fight with the gynecology office and it took two letters from both the gastroenterologist and the urologist to convince the gynecologist that maybe I had something a little more serious that JUSTabdominal pain.My surgery ran way over time.It was 4 1/2 hours long.That's a lot of mess they found on the look see.I wound up having the whole ovary/colon fiasco going on in addition to endometriosis and adenomyosis(where the endometrium grows INTO the muscle of the Uterus making it swell and hurt really bad,I had a Fibroid Tumor and cysts around my ovaries that were not just functional cysts but thank goodness benigne.Beginning the 3rd week of my recovery from the hysterectomy I had a shut down of my bowel and urine function. I was rushed to the emergency room for emergency surgery to remove a life threatening impaction.That morning, the morning of the emergency surgery,I was told that I should handle my pain which as JUST a little constipation problem with a fleet enema at home. That fleet enema took me to a collapse on my bathroom floor and I had to be carried from the van into a wheel chair to make it into the ER area.It's only a miracle that I didn't bust the gazillion stitches I still had inside of my body from the major excavation work that had been done.I had every bit of female equipment removed except for one ovary left floating in pelvic space.So, while I know thoghts here are well intentioned I'm asking, as an advocte to the plight of all women who have been misdiagnosed and dissed and other wise tortured, to pleas have an awareness that for women, things are rarely so simple as just haveing JUST abdominal pain.In addition, having to post ones very personal >>>. Also what are the constitutional and systemic symptoms, if any?<<<<Constitutional and systemic symptoms here seems to be a moot point.If our female doctors don't believe us with our very real and serious conditions, then how is anyone here going to be able to direct us when our pain has already been called just abdominal pain?Obviously, the people asking for proof just don't know, becaue if they knew, they would ask that question with a little bit more sensitivity to women who are confused and hurting and horribly frustrated.Well, I don't have have any links to websites here and I'm not going to post my personal pathology report from the surgery here to validate my self.I'm a woman who has woman problem. and I guess my word is all you hve to believe.I can here looking for understanding because my bowel keeps shutting down.No one has ever responded to my first post over in the womans section since I have arrived.No One.Thanks for hearing me out,and if you need to delete this go ahead.I just needed to ventOh, one more thought..........When ones laproscope comes back clear then it's time to move on and consider other avenues.Kamie
 

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Heather, oh and abouit that weight gain, well I have a lot of thoughts on that but I'm not posting them here so if you want to private mail me you can reach me atKamiebiz###yahoo.comand I will be glad to share with you what I have learned over the years about weight gain and bloating and all those things I am working on right now for my own body.Right now I am in a delicate balancing act but I can still waer my size 3 riding jeans with tummy room to spare. However, it's a balance of good food and a whole lot of other stuff that would be too long and probably too boring for most people to appreciate.Kamie
 

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KamieI'm so sorry to hear all you've been through. But in Mike's defense here, when he says "just" pain, he is only tryng to isolate symptoms to get to the correct cause and actions. Not to miminize the pain. I think you'll find very few people on this board who would ever minimize the pain someone is going through. But treating someone with pain and constipation is different from treating someone with pain but no constipation. and Heather - been there. I've had a doctor who everytime I went in would try to prescribe Levsin and nothing else. I would say, we tried that last year and it did no good. Then she'd say, we'll up the dosage. When I said we tried THAT too, she gave me a blank look. She is no longer my doctor. take carenancy
 

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Nancy, thankyou for your interpretation of the language of Mike here.I am sure the fault lies in my confused thinking as to what I think I read.chalk it up to a woam with a hysterectomy.Nancy wrote :I'm so sorry to hear all you've been through. But in Mike's defense here, when he says "just" pain, he is only tryng to isolate symptoms to get to the correct cause and actions.I am so very glad you clarified that for me because I was absolutely certain that Heather made the points of her condition quite clear.Heather wrote: anyway, about three weeks ago you all may have remembered I posted about some pains I was having that I was unsure of and the common "diagnoses" here on the board was just a bad case of C. ANYWAY--I had notified my doctor because I was in LOTS of painI thought she was clear about her situation but apparently once again I am confused.In my personal interpretation, I thought Heather had presented enough clear informatin here on this board. At least enough that everyone here had giveen her a joint opinion.I also thought that her description of her food issues sounded a lot like things I was going through before hy hysterectomy.Heather wrote:I told him most nights I dont even feel like eating because I'm so nauseated and dinner is usually the only meal I eat, if I eat at all. No I don't consider my self any big veteren of the IBS body wars, but from my very limited knowlege of this process and problem it sure did sound to me like nature of Heather's problems spoke clearly.So, once again, If I'm confused....So Sorry.I just thought I clearly saw the plight of a woman in distress and pain.Ohwell, blame it on my emotions.You're right. I've been though a lot.I'm still going through a lot.Infact, I have a real jackpot going on.I just got back from the ER with my husband!He's pooping blood.not blood in his stool.He's pooping blood.Runny drippy blood with little clots.He's done that 6 times today.Now he's dizzy and really tired.They took his blood at the ER and did some x rays and then sent us home saying that it wasn't an emergency but urgent and he needs to try and get a gastroenterologist appointment tomorrow but in the same breath they gave him a work release to go back to work tomorrow.They gave us this piece of paper that says that if poops a cup of blood then he should go back to the ER.Well, I asked for a cup when he had to poop at the hospital and they refused to give me one.He was so bloody runny that I felt they might want to see exactly what he was pooping.But alas, the intake person was wretched and informed me that such things were not necessary.Well, then he had to go again in the treatment room so we asked for something for him to poopinto and once again they said it was not necessary but the nurse walked him to the bathroom.So the nurse told him to let her see what was in the toilet when he was done.So when he's done, he gets up to call the nurse and swhoosh there goes the toilet with it's automatic electric flush.So the husband sits down again because he can feel the blood pooling in his lower gut and finally the miracle happens and he leans out of the way of the light thing and manages to get up with out triggering the flush and hooray the nurse arrives and verifies that yes in deed the toilet bowl sure dose look like bright red friut punch.So then we go back to the room and the doctor says ....well, all your tests come back fine and dandy and you aren't writhing in pain so you can go home now and see the doctor tomorrow or the next day, as soon as you can manage an appointment for sure.Oh, and if he passes out then probably it might be a good idea to go back to the ER because since he didn't poop in a cup, and the toilet looks pretty full of blood, they can't really be sure how much is there so they can't makes a good call on the problem.So we're home now and he hasn't pooped but he really tired and all he wants to do is sleep.But you know what....we're probably just confused because we are tired and we've been though a lot and afterall, he was just pooping drippy clotty bright red blood. And it's only blood and there was no REAL pain or cause for concern.So, Nancy, you are probably right.I am absolutely sure, it's just me and that no one here ever makes light of another persons pain.Thanks for translating and being the person to tell me what Mike thinks and means, because I guess I just don't speak the right IBS language.Kamie (the confused one)Maybe I just need a good psyche consult.
 

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Read my post on internal parasites.....they do cause pain....lower back pain......they can make your life miserable and they are everywhere..very easy to get....you don't have to travel abroad to get them..they are in the good ole US of A. Find a doc that will test you for that. Go on line and investigate this..you will be amazed!!!!!! good luck!!!
 

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Sula, a friend of mine did a big cleanse thing with regards to internal parasites. I don't know much about it but it helped him a great deal. He worked with a doctor for the process.Currently, I'm worried about my husband pooping blood today.A few weeks ago we had a disaster of a sewage back up that was so bad that the concrete foundation had to be jackhammered and the pipes had to be replaced.This process was done several years ago and this current fiasco was a part of the job that was not done right.Any way, the back up was something that lasted a few weeks.The toilets kept over flowing and the earth was actually coming up through the Tub and the shower pipes.We had a big back up over labor day and the plumber was out yet once again and said there's nothing I can do until wednesday.So we were left with few choices and we moved to a hotel for about 10 days.During our Hotel stay my husband got sick one night.He broke out into a cold sweat and felt shakey and icky and when we got back to the hotel I took his BP and Pulse with my kit.He had a high BP and his pulse was up in the 90's.This kind of thing is very very unusual for him.He ALWAYS runs an athletic pulse and BP and he does not get sick a lot.So then over the past few weeks he's been feeling really tired. He just can't seem to wake up.Sunday he slept almost the whole day.He thought he was just tired from a big project at work.Then today he turns up pooping streaming blood.So I'm worried.The Internal Med DR called tonight and she's upset the ER let him go. She tried to talk him into going to another hospital since she has had a lot of patients have problems with that hospital.However, my husband says he does not feel as ill as he did earlier and that he's just tired now.The Internal Med doctor thinks he lost too much blood today so she got him to agree to an office visit in the morning and made him promise if he has any more drippy blood that we will go immediately to the other hospital.Personally, I think he got some bad thing from all that sewer mess but everyone says that simply can't be. But I say why? He had to clean up a whole lot of that back up mess while we waded through the days of doing the plumbers back to back until someone would go in and fix the real problem.So I'm frustrated and I think it's possible that my husband might have some nasty parasite or worse.I AM sooooooooooooooooooo upset.I'm tired of everyone saying NOT!Kamie
 

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Keeping fighting mad Kamie! My dear sis-in-law (from your wonderful state) keeps telling me in her delghtful drawl, "A passive patient is a dead patient! Now get after them!" She is a nurse practictoner and she is the only thing that keeps me dragging myself from one doc to the next hoping somebody will just give up and fix what ever is wrong! My health history and hysterectomy went a lot like yours. Only took 1 year, several docs in two counties before someone took my "abdominal pain" seriously. (by that time I was in menapause, at age 22) Now, 18yrs later, I get to be cut up again in a couple of weeks so they can FINALLY remove the one ovary they so stupidly left me. Slight chance of ovarian cancer this time. I've been down and out for three months. I finally had to tell them - I wasn't taking no more meds for parasites I never tested positive for - NOW TREAT SOMETHING ELSE! It only took until dr #7 to get treated for what was wrong! I turned #6 in to the state medical board. This has been a trip through medical hell. It could almost be funny but it seems like this happens almost everytime I get seriously ill. What really helps these little trips is my family genes. We don't run fevers and our white blood counts never changes, ever. My siblings and I have been allowed to get very ill because the ONLY symptom was pain. (Even a ruptured appendix - he had no fever and no change in WBC) We keep telling the docs, those aren't markers for us! I do realize docs are human. But so am I and I have better things to do than suffer needlessly. I'm not a hypochondriac, I hate drs too much to think up excuses to see them. Keep fighting Kamie, no one else will do it for you!
 
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