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Severe unintended weightloss unexplained

Posted by @scottwr in Cancer, Jun 11, 2012

Hello everyone,
I am brand new to the forum and I appreciate any and all input to my topic.

My wife and I had our 2nd monster in November and we had her at the jacuzzi...with no meds...and we proudly brought in to this world our 5lb.8oz . joy Ms. Charlie Jean Robison. The birth, attended to by a midwife, went well with no complications.

My wife, 23, weighed 170lbs at the time of birth and at 5'11" with a slender body type, her normal weight has been 130 to 135. and same as with our 1st girls birth, my wife dropped the weight in 2 weeks with no exercise whatsoever! You may be thinking I'm about to hit you with a wonder diet and that this is a infomercial..its not. After our 1st baby was born in 2008, she easily returned to her normal weight in 2 weeks and both were doing great . She didn't breast feed and her check up at 6 weeks said all was well.

Then about a year later she began to lose weight. It fluctuated 10 or 15 lbs at a time. She ate and ate, and I watched for signs of bulimia, anorexia, or anything that might explain her weight drops. Nothing either of us could notice was out of the ordinary at all. She loves to eat and if you say red she says lobster! Her weight got as low as 113 which is what she weighed when we were surprised with monster blessing #2. We talked things over and she wanted to have a home birth with a midwife. We went to monthly checkups with the midwife (20+ yrs and over 900 catches, highly recommended)and her weight was quickly becoming an issue. The vitamins, recommended healthy diet and rest she recommended was what got my wife to barely make the body condition our midwife deemed acceptable just in time for the birth last November. We opted for the water birth which went great and helped immensely with the pain and after about 3 hours of labor our home got blessed with a small but very healthy bundle of joy.

Post partem checkups of both mom and baby were all normal. She wanted to breast feed this time and unlike the first birth , this time she had no problems with milk production. The baby liked to eat too...if you said red....she said...ok she didn't say lobster but I bet she thought it!

Then came the trouble we find ourselves in still. Despite all our efforts my wife lost weight and lost weight to the point we put the baby on formula because it was as if moms life was being drained with every feeding. She got so tired and weak and where we live, health care is , well, lets just say, its long as you're healthy....a trip to the emergency room in order to avoid the usual 2 week wait for an appointment just to talk to a doctor produced nothing but a stronger feeling that the hippocratic oath must have went the way of school prayer, the pledge of allegiance and the dodo bird!. "Patient heal thyself...via internet" seems to be the way of life and around here, literally, the only way of life! My wife is not anorexic, bulimic, nor is she, or ever was a crackhead, which is way she looked upon in disgust and accused of by the staff at every doctors office we've been to. She's losing about a pound per day and is often bedridden for days after overexertion...caused by doing things such as riding to Walmart with me to shop for food...the trip to town in itself takes a heavy toll on her.

We saw a doctor 3 weeks ago in a bigger town 100 miles away hoping that bigger city meant service...big wife tipped the doctors scale at a whopping 116 lbs. After explaining what the situation was to the receptionist and then the assistant who weighed her and then to the 2nd cousin of the postman who was fixing the doctors wife's sister's car...we finally got to speak with the doctor who after a thorough explanation of his need to know if recreational drugs may play a part of her daily life and the importance of full disclosure prior to any tests he may or may not order and we told him emphatically that "NO We Are NOT CRACKHEADS!! We should have told him we need his full disclosure of any drug use, college records , if any...... his credit rating and a certified copy of his Mickey Mouse membership, as required by law to have before practicing as a Doctor of Assumptions with a minor degree in the field of Bias Without Fact /Stereotyping IV as a minimum for obtaining a license by the State...But it was easy to see the man knew his field of endeavor quite well, so I didn't question his qualifications and even though I hold no degree in that "ology". I made the assumption (albeit de facto of bias) that his "ology" was at least accredited..

He looked in her ears, felt her sore lymph node.and felt her thyroid gland, asked about her listed symptoms from the check in sheet. and focused on her hair loss. He quickly left the room and sent a nurse in to draw blood and give her a shot for alopecia, a prescription for sinusitis, and marked out depression (My wife will not take anti depressants for fear of certain known side effects) and instead diagnosed fatigue. Her 116 lbs of weakened, ailing and disheartened frame with so much grace and dignity rose from her chair, looked at me and said can't he see I'm dying? I'm withering away and he prescribes antibiotics for an ear infection? I don't wish to die here. May we go home now?"

That was on the Tuesday before Memorial Day this past May.. Wednesday morning we received a call from the doctor himself regarding the blood test results he reviewed after we left his office. He said he took the liberty of scheduling a CAT/Scan for my wife as the results indicated thyroid disease. He mentioned a test using radioactive iodine or whatever its called, and stressed the importance that we not miss the appointment. This urgent matter was scheduled for the Tuesday after Memorial Day weekend.....6 days away....with Thursday and Friday left in the workweek! I called his office back shortly after his call and was told he wasn't in. So I called the diagnostic facility enlisted to do the CAT/scan and asked if there was any open times we could change our appointment to this week...of course there was one for the next afternoon and we rescheduled due to the urgency the doctor spoke of.. We went to the appointment and were told the doctor did not order a CAT/scan but rather an ultrasound! Okay....the technician asked my wife if she knew about how far along she was and my wife thought she was talking about cancer. She asked her if they for sure found cancer? Cancer? No! You aren't pregnant ? Uh....No.

The tech said she would call the doctor and see what he wanted done. Shortly she returned saying he was gone (Thursday) for the weekend and should be back next Tuesday! The tech took and ultrasound of her throat concentrating on a lymph node and her thyroid gland. She weighed my wife earlier and she had lost 3 lbs in 2 days. Down to 113 lbs.

The tech promised to send the ultrasound to his office in the morning(Friday) so he would have them as soon as he arrived from his 5 day weekend. didn't happen. We spent the days from Wednesday when the C word was unspoken but pointed at our lives with both barrels through a long and tear filled weekend till we heard from the doctor Tuesday...noonish...after repeated unreturned calls from us. He again pressed the point of her conditions urgency and that he made an appointment with a cancer surgeon and turned her care over to him,...appointment set for the following week on Thursday...crucial and urgent...don't miss it! I called the surgeons office and asked if our urgent appointment could be moved to a day this week...yes it could...tomorrow at 3! Tomorrow at 3 we were there expecting to go over the options available to us in terms of care, costs as we have no insurance as we are the wealthy but not wealthy enough for insurance self employed family that the government loves to burden with taxes that will provide 100% paid by me health care service to some do nothing but complain 3rd generation expectant momma of three heirs to the family business that specializes in government relations. They know if their relations need a check the government will get it ....and they do...from me. But who am I to whine about no health care when there are so many without a job ...because its too much work and too much work might make tired which might make them sick and tired.. Thus a new law must be passed to protect the new found unfortunates from discriminatory practices such as hiring the sick and tired because its unfair to them to be required to work in an environment that is proven to make them sick and tired! So insurance for everyone and its on me!

(Rant break complete...apologies to all)

We arrived at the doctors office, filled out the forms and paid yet another office visit of $167 and waited to be called. Shortly thereafter we were asked to wait in a large meeting room after they checked her blood pressure and weighed her,,,now at 111 lbs. and the doctor would be in to talk with us after he had a chance to look at the blood tests and the sonogram sent over from the colleague he later said he has never heard of. till now. The walked in and asked what was "going on?" Why are you here or better yet what do you THINK you are here for." Now that is last thing I expected to hear and really I was feeling like we were lost in a live version of the Twilight Zone. My wife told him what had occurred up to this point and he said "Ok...I am a surgeon, I cut things out...I don't prescribe medicine and I don't take your temperature...I do nothing other than open you up cut out that which is bad and sew you shut...I looked at the tests, which are not tests one uses to diagnose thyroid disease but since the TSH levels are right in the middle its for certain thyroid disease does not exist here. So why are you here?.I have nothing to cut! He further mentioned the lymph node the other doctor called swollen to near twice its normal size was not . He even went as far to say that everything the other doctor stated to us regarding his findings from the two tests were incorrect, exaggerated or completely false! A case of post partum depression would be his first guess as to be a leading contributor to her condition and possibly some other factors as well, but with absolute certainty there is no cancerous lymph nodes or thyroid gland involved . He told us a doctor would only send a patient to him if a surgery was needed . He was shocked at the gross disregard for our feelings and the fear, confusion and worry we must have went through needlessly and to the place reserved for confirmed cases set for surgery.

We were so happy to have been wrongly diagnosed that our "reprieve" falsely gave us a sense of joy we nearly forgot that her ailments were still real and very much a cause for concern.

With that said, as of this writing (June 11, 2012) we are still in the same position today as then, not knowing the true cause of her body withering away. She has 0% body fat...weighs maybe 100 lbs. and day after day she loses a little more hope as cruel, heartless people whisper untruths and assumptions behind her back or outright blast her publicly with accusations of being an addict of meth or crack and what kind of person with two kids could allow herself to be in such sad shape. She should seek medical help and get her life in order for those poor little girls...If they knew the truth I doubt they'd be any less cruel. Day after day we seek medical help and its come to the point I believe this world is at end, the police are now a corrupt extension of an oppressive government, and doctors, hospitals, and insurance companies are in cahoots with their only purpose being the systematic fleecing of those whom they are entrusted to care for, yet are left to suffer with only the hope that tomorrow maybe their luck will change and someone will care. But I could be wrong.

Thoughts anyone? Tell me how could two licensed physicians be polar opposites in their opinions of two standard test results. Further, how could both be so far removed from the doctor/patient relationship and basic common decency requires, to even bother with a follow up call to see if the patient who paid for service in full received conflicting opinions and pushed off onto another doctor when one or possibly both opinions were wrong, isn't even given any concern whether or not she lived or died after they worked their magic and mustered up the mojo required to meet the standard they so solemnly swore to be ethically bound too?

And my words sound a little out there? Is he off his rocker or perhaps exaggerating ? Is this for real or is it a sick joke? I will say with my deepest respect for doctors who spend long hours day and night doing all they can for the health and well being of their fellow man that this young, once vibrant, tall, elegant, epitome of beauty is the love of my life (all 50 years of it) was cheated without shame, without a further thought as to her current state of well being 8 short days since being virtually diagnosed with cancer, readied for the knife, reevaluated and sent home to live or die because its evident all that could be done...was. I just wish we were told what they actually did...the wonders of modern medicine really do make you wonder.

Tags: Cancer, mental health, Other, womens health

MARYLS likes this

Posted by @shellwil, Jun 17, 2012

I have had many of the same symptoms as your wife. I am on my 2nd marriage with 2 children from the first marriage. My current husband did't have any children of his own so we decided to have a baby. We lost the first preg. at 5 weeks. We became preg. again and during this preg. everything was somewhat normal, however at times I would be in horrible pain in my stomache, pelvic area and had a complete placenta previa. Luckily he entered the world a little early but appeared to be healthy. We assumed the first loss was a fluke until I became preg. again in 2007 resulting in a loss at around 8 weeks. Devistated, we hoped we would have the same exp. as last time and decided to try again. In Oct. of 2008 we became preg again, it was confirmed in Nov. and in Dec. I began to bleed. We paniced and went to see the Dr. I was put on strict bed rest which lightened the bleeding but it never stopped. It was later found that I again had a complete placenta previa and it was thought that the bleed was coming from a complication of the previa. I was in alot of abdominal pain and unable to gain weight, but refused to give up. My blood pressure was dropping horribly,sometimes as low as 80/40 and I was told if it continued I would have to start recieving transfusions or I could save myself through abortion, which I refused! Ultimatly God stepped in and on 2/17/09 our son was pronounced decieced! I had a D&C that day. We had our son autopsied because we were told most late term lossses are the bodies way of "getting rid of imperfection" or in other words he probably had a severe birth defect. The autopsy showed absolutly nothing wrong with our son. Due to the amount of pain during the preg. I was to follow up with gastro. I made the appt. which was months out, and began using birth control. As fate would have it I became preg. while on the Neuvaring and didn't see gastro in time. This preg. had some lite bleeding in the 1st trimester but nothing like the other. Again I was in a ton of abdominal pain right behind my stomache/bladder. At around 25 weeks I went into labor and was hospitalized. They were able to hold off labor with large doses of magnesium which made me very sick. After 8 days of hospitalization and large doses of magnesium I was still having contractions but no cervical change. My husband and I decided if they coldn't stop the contractions we could lie in wait at home. I was sent home on turbutaline 4 times daily and strict bed rest. At 28 weeks I had a positive fetal fibernecton and was told that ment I would probably have our son within the week. The contractions never stopped but somehow I managed to hold on to him until 35 weks. He was born small but seemingly healthy. In the midst of all this our other child began running fevers in excess of 105 degrees and the nodes in his neck would swell larger than golf balls. This seemed to be occuring in a pattern and we were refered to ENT. We had to wait for another flare up so they could do a CT. It revealed his large nodes but said they were reactive. After a few more flare ups it was decided to take the swollen nodes in hopes this was the problem. After his surgery he was still getting sick but not as regular and the fevers were not as high. We were than referred to an immunologist at Cardinal Glennon who discovered a deficiency of imuune system, the IgG's. He was given a booster shot called a pneumovax shot and his system responded. After our last child was born I became increasingly sick. My hair was falling out, I was 138lbs when I delivered and within weeks I was downto 100lbs. my body is weak and I can't get out of bed for any length of time without getting exausted. The abdominal pain is still there along with bowel issues. As time went on I began having joint pain esp. in my knees and shoulders. Not even a year after his birth I got Pnemonia. Did a course of antibiotics felt better for about 3 days and the Pnemonia returned. This time it was 2 months of antibiotics before I kicked it. During the course of antibiotics I developed a fungal (candida) infection due to the loss of good bacteria. I saw a gastro Dr. through Washington University in St. Louis mo who did an endoscopy on2/13/12. At the end of that same month I was drastically declining, down to 85lbs. My husband took me to several ER's were we were treated like I was sick because of a "haabit." Finally, on 2/28/12 he took me into one last ER this time St. Lukes hospital and I was seen by a Dr. who didn't look at me as an addict and decided to run some "nt so normal" blood work but we would have to wait for the results and due to insurance reasons I was sent home. Two days later I had a police officer at my door telling us I was to return to the hos. immediatly, they had found something in my blood. As it turned out I had a bacterial blood infection Gram-Negative. After culture it was realized the bacteria in my blood is normally found in the digestive tract and since I recently had an enndo. w/biopsy it was believed to have entered my blood then! While I was hospitalized they actually listened when I told them about my sons immune problem and checked my IgG levels and you will probably find this hard to believe but I as well have a defeciency. While I was hos. my youngest child began with high fevers and large nodes in hi neck and has been sick once a month since. Everytime I take him to the Dr. it is thought he has strep but the test is always neg. So we begin testing on his immune system next month. I am steadily getting worse and my body is beat up! It is hard to get out of bed to enjoy the children we fought so hard to get here. I see immunology July 9th and I am going to Mayo in MN July 30th. Things that I have found that help are a glutin free diet, cut out added sugars (unnatural sugars) whey protein shakes, when made with frozen berries and yogurt they are tasty, probiotics, and I also recieve B-12 shots because my body no longer absorbs B-12 or vitamin D. Anemia can cause alot of her symptoms has she been checked? If not mabye trying a supplement, B-12 and/or Iron might help. I hope your family finds answers soon!


Posted by @pattyjean, Oct 11, 2012

I too had no idea what was wrong with me. I am a 65year old woman with a 49 year history of Rheumatoid Arthritis. I have been treated with immune lowering drugs for arthritis for many years. I recently had a sore tonsil about 5 months ago and was put on three different antibiotics over several months. I just recently was finally diagnosed with cancer of the tonsil and also cancer of the lymph node in my neck. After several wasted weeks by my ENT doctor, I made the decision to go to the Mayo Clinic. I live in a small town in Arizona and fortunately have a Mayo Clinic in Phoenix. I can't stress enough how important it is to go to a competent place for treatment. I am stage 4 and the doctors there have the latest technology. I went there yesterday and will be treated there. My doctor has assured me that they have made great strides in all cancer surgeries. I would still go there if I had to mortgage my house. I will have surgery October 31 and he said my prognosis is excellent. Please go there to seek help. They send you to other doctors as needed within their same facility. Good luck. Patt Ginevra

Anonymous likes this

Posted by @raofsunshinesarah, Oct 12, 2012

Patty your story reflects part of mine mixed with my biggest fear. I have Rheumatoid Arthritis as well and I know cancer is a big possibility with this hateful, unforgiving disease. I was officially diagnosed at age 27, but had problems since around age 12. (Docs here in Oklahoma aren't very diligent.) I'm now almost 32 & having the worst year of my life with this disease. I wanted to reply to tell you I will be praying for you thru these treatments, and to ask if there are any signs really to watch for. Please let me know how you're doing from time to time...I'll be thinking of you.


Posted by @raofsunshinesarah, Oct 12, 2012

I will say that I've been losing weight lately..and nauseas a lot so I won't eat or I'm hardly hungry. Also, (I apologize if this is too much info for some) from the beginning of Nov '11, til the beginning of July '12, I had what I could describe as a constant heavy period that whole time. Praying the RA doesn't factor into that but any information, advice would be welcome. Thanks so much.


Posted by @pattyjean, Oct 12, 2012

Hi Sarah,
I'm not sure your age, but I experienced that just a year or so before my period disappeared for good around age 48-49. I had very heavy periods and then stop and restart. It could be part of the change, but with weight loss, you need to be seen, by an internal medicine specialist. Try hard to go to the Mayo Clinic. They have them in Arizona, Minnesota and Florida. In any case, you should be seen soon.

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