Discussions By Condition: I cannot get a diagnosis.

Please Help I cannot get a dx (exteme weight loss)

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: Helpmeplease
  • November 13, 2006
  • 06:29 PM

I want to give as much information as possible so if there is something I do not write, ask and I will provide as much information as I can.
Past Hx-
Two years ago, I was in a car accident hit from behind while stopped. After, test after test the best they came up with was ataxia and post-concussion syndrome. I initially refused medical tx on scene and later my husband took me to the emergency room and I said I was fine and promptly discharged. I followed up with my PCP who said I failed every neurological test and sent me to a hosptial that dealt with neurology I guess. I was admitted but going to be sent home until my doctor spoke with the er, even though she sent me with the paperwork. Anyway, after being evaluated by a neurologist consult I was admitted and stayed a few days and sent to follow up with a movement d/o clinic. Anyway, eventually I got a dx of mild traumatic brain injury and basically now I just suffer horrible migraines with most medications failing to have any effect including imitrex injections. The only thing that somewhat touches the pain is fioricet and I take phenegran or zofron for the nausea.

I am f/28 y/o and about a year and a half ago had a positive TB test with negative chest x-ray. I work in mental health and had frequent contact with hospitals, jails, homeless shelters, state hospital and I worked at a clinic with homeless/forensic type of consumers. Before this I had tested positive for mono and I knew what it was because I had it when I was 18 y/o.

Nonetheless, it took me several weeks to get the test results back for mono so I kept working and worked through the whole period. Everyone around me would get sick like cough, strep throat and those sorts of things. I did not but when the strep throat went aroun I got horrible pain in the bones of my feet and a rash which was given a dx of a strep infection. I have not had a cold in years but everyone around me will get sick with like strep throat and the above mentioned. I have not got the flu either.

Current Issue- I was pregnant, had my baby 8 months ago with no complications. I weighed close to 190lbs pregnant and pre-pregnant 150 maybe. I am 5'8. I lost some weight maybe five pounds or so because I gained some back after breastfeeding my son for three months. In June I weighed 173 lbs and than around July or August suddenly started to drop weight quickly and at first 20 lbs a month or so and now we are in November and I am about 108 lbs and still losing. A size o is too big and you can see every rib on me. At some points it slows down and than will pick back up. It seems the more I eat the more I lose. I drink a instant breakfast every morning (carnation) for the extra nutrients plus snack and meals throughout the day. I had a lump on my upper abdomen, I guess and when I weighed more they thought it was a hernia and did a CT with that dye drink but everything was "essentially normal". Next time, due to the weight loss it was my aeorta that they said they could feel but it was that way in skinny people. Finally, sent to a gastrointenologist (sp?) who said it was probably abdominal seperation. Anyway, so far has done an edoscopy with not much found, still awaiting biopsies but will probably be normal and the only thing was some mild errosion in the stomach. I am scheduled for a colonoscopy but the medication given (max amount I guess did not knock me out). Same issue with Novicane with the dentist could not numb prior to pregnancy and sent to a specialist dentist and I forget what they are called.

The neurologist had tried Nortriptyline for my migraines and my heart rested at 160 I believe and quickly pulled off. I had another recent incident at an er visit (drug reaction-unknown) where the EKG states unconfirmed dx and borderline qt waves.

Okay, my lab work has all been normal and stool samples (yuck). The only thing is that even though in range and with the amount of sugar I eat my glucose has been like 68 or 73. When I was breastfeeding I am not even kidding I would drink three gallons of milk a week which was odd since this is my second child and I never did that before but who knows may be normal.

At work, I get told how pale I look etc. I feel good or okay, increased energy, do not require much sleep and nothing works to help me sleep so I gave up with even trying. I am super sensitive typically to any medication but not right now. I do take dexostrat for concentration but have now only been taking it when i need to focus. Prescribed for the mild traumatic brain injury and I take the fioricet and phengran or zofron PRN.

My brother came to visit around the same time I started to lose weight and he was losing weight but not as drastically. He is having simikar sx'x still except with joint pain and they have been unable to dx him.

I cannot afford to lose anymore weight, I look horrible but no hair loss etc just pale. I did get something on my fingernail that is eating away at it and it is green or yellow (depends on the week) and was told to dip in part water/bleach and use lamisil but it just gets worse but does not spread to other nails. People around me are expressing serious concern and have even asked my husband if I am dying. I do not know where to go from here and any suggestions would be helpful. Please I am desperate and even willing to go out of state etc for medical care. My mom does have graves disease and dad diabetes. Thyroid tests for me have been normal. I no longer provide direct care in the community and still work in mental health just more an admin type of job. The only exposure I have to hospitals is when I occasionally have to go to are psychiatric emergency rooms which is solely a hospital for that purpose.

I do smoke (not much) but started probably August and basically just at work. I do not drink etoh as I am too sensitive or was but still do. I drink two caffeniated drinks a day unless I work as my shifts tend to sometimes go over twelve hours but basically I work two days a week and full-time mom as well.

Please help me, direct me or any advice would be so appreciated as I cannot seem to get care coordinated. I do not have that much more weight to lose at my height.

Thanks for listening

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11 Replies:

  • The answer might be in your diet. I think you need to check just how many calories you are consuming and whether that is enough. Your blood sugar level is low, but we are all different and it might be quite normal for you. It is something you should discuss with your doctor though as it could be a symptom of something else. It is a bit of a long shot, but I wonder if you might have Celiac Disease (gluten intolerance). Usually, this means digestive discomfort, but not always I understand. Your treatment for your nail sounds right to me, so if it is still persisting maybe you should try another antifungicidal cream.
    Anonymous 42789 Replies
    • November 13, 2006
    • 07:38 PM
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  • Thanks for the response, they did the celiac panel and it was fine. I consume numerous calories they said whatever I could eat that was hiigh calorie and I eat everything in site. Brownies, chococlate, ice-cream, yogurt, chips, sushi everything. I am eating more than I ever have in my life. I excercose a bit too but basically just with the kids like kicking the ball etc but no routine to that. My first child it took me years to lose the weight. I look sick everyone is worried. Is there any sort of specialist that I should see?
    Anonymous 42789 Replies
    • November 13, 2006
    • 09:04 PM
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  • Not sure when you were tested for Celiac Disease, but I understand that childbirth is thought to bring it on in some cases. Try checking up on candidiasis on the website (and elsewhere) also. This is often associated with thrush, but it can be a problem in your guts also. Not saying it is that, but it is worth a check (it is quite contentious with some doctors).
    Anonymous 42789 Replies
    • November 13, 2006
    • 09:24 PM
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  • the three things that come to mind while reading your post are high thyroid-grave's disease, diabetes, and milk allergy. grave's caused me to loose a lot of weight--i lost all my pregnancy weight within a week w/o trying to.--you would have other typical symptoms also.diabetes causes weight loss in type 1s. have you had diabetes testing? fasting, Oral Glucose Tolerance Test? what tests were the 68 and 73? --fasting, random? or post prandials? were they done with home meter or lab?milk allergy ---I used to consume 3 gals. of milk a week. After the birth of my 3rd child I found out I was allergic to it. It took me a good year to get over the terrible cravings I had for it. (it is true you very often CRAVE what you are allergic to). I also had intestional cramping and constipation caused by this allergy.other than that I don't know.
    Anonymous 42789 Replies
    • November 14, 2006
    • 06:22 PM
    • 0
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  • I believe the test was random and with no fasting for the glucose. I cannot remember if I mentioned this but my brother had come to visit prior to the drastic weight loss and had been going through the same thing (i.e. losing weight not as much and similar symptoms except he has joint pain). He is a year younger than me and we are very similiar and both have a rare genetic eye disorder (incomplete albinism). Anyway, he is having the same trouble getting a diagnosis. I should mention that the rare eye condition is due to our parent's having some sort of matching gene. I do not know if that helps but I am still looking. I do have the white coating on the tongue, have had thrush numerous times and used to take a syrup that was was a prescription. I have had with certain medications, particularly anti-biotics where my tongue would hurt, not sell but very painful and would make patches on my tongue.I am going to try organic milk and see if that helps.Thanks for all the input as I feel I have limited resources and I have heard that medical and care do not go together in this state. Once again this week my whole family is sick with colds and I have yet to get it, which seems to be the norm lately.
    Anonymous 42789 Replies
    • November 15, 2006
    • 04:57 PM
    • 0
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  • It is worth eating some antifungicidal herbs if you are pursuing the Candida connection. It depends on what you can get your hands on but ginger, garlic and oregano all have these properties. You should try and cut down on the sugary stuff and eat more starch also (potatoes, etc.). Eat plenty though. Good luck!
    Anonymous 42789 Replies
    • November 15, 2006
    • 06:47 PM
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  • Thanks, I am going to ask about the candida syndrome. It seems to fit most of my symptoms. I will try a different eating style more of the starch stuff etc and see if that helps. Also, going to start drinking cranberry juice and see if that improves anything. I have only lost a couple pounds this week so I have held pretty steady/ Last week, I lost five or so but it seems to go in spurts/ Thanks for the guidance.
    Anonymous 42789 Replies
    • November 16, 2006
    • 05:14 PM
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  • There are a couple of points more. Firstly and most importantly, I have not really convinced myself that candida could cause such a high weight loss. You probably have the symptoms of it, but I wonder if there might be an additional underlying problem. You worked as a carer in the community and I imagine were exposed to some pretty insanitary conditions. Is it possible you could have picked up a parasite along the way? Your doctor ordered stool tests and he might have the answer to that already (but then again, they might have been for something completely different). If he is not aware of that possibility (if it is one), then it might be something he hasn't considered. Cranberry juice is actually quite good, but watch out because a lot of it is laced with added sugar. Incidentally, because you are not catching colds it probably means that your immune system is working hard. That might imply it is already active (i.e. fighting something - candida is supposed to do that but who knows!). But then again it might mean you just have a good immune system. Good luck!
    Anonymous 42789 Replies
    • November 16, 2006
    • 06:55 PM
    • 0
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  • Have you been tested from hyperthyroidism. Several of your current symptoms mimic that of Graves disease. A simple blood test should be able to rule out a thyroid problem. Has your tolerance to hot/cold changed as you've lost weight? What about emotional/mental changes? Are you irritable? Do you find your mind racing at times? Any change in your heart rate?
    Akumal 5 Replies
    • November 17, 2006
    • 00:22 AM
    • 0
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  • I have been tested for all the thryroid and they all are with in range. On the other hand several years ago it took them a year to dx my mom with graves disease because the symptoms were atypical and made it look like something else. The other thing is when I had the endoscopy the medication (max they could give) did not knock me out and shortly after I was not sedated at all. They had told me I would be asleep but it did not work. I had the same problem with novacane at the dentist he had to send me somewhere because it would not numb. I have severe insomnia and gave up trying to take anything for it because the max doses do not work and I end up wide awake but basically a little nutty. Same with pain medications little to no effect which is awful with migraines. You name it I tried it and I am done with trying for that. That is the only time I want to really sleep and cant. When I had mono for the second time a few years ago I slept but not abnormally I was just tired and knew the feeling. I worked during that whole period. I had the stool tests and everything was normal, it seems to be the standard everything keeps coming back normal and something is very not normal. My mood is changing as every bone is visible and people have made comments "are they gonna let you die" so I guess in that sense I have realized that may be where this ends up I don't know I have no answers. I just want to know and I wish I could say it was an eating disorder or something that way it would make sense but instead my family is watching me fade away withh no answers.I did work in some really unsanitary conditions I basically walked into homes with feces, urine, roaches and once a guy near death who had vomit, blood urine and who knows what else on him. I spent a good ten minutes gagging at the smell, trying to hold back throwing up until the fire department got there. I ended up with a swollen tonge after that but I think it was because I was trying not to throw up which made it worse. I have seen a lot of conditions and prior had always a negative tb test even the year before but that year I was positive but negative chest x-ray. I remember something about starting medications because of the high risk profession but I was not followed back up with and a couple months later ended up pregnant. I no longer do direct care but I just went on vacation and everyone ended up sick and it did not touch me. I almost got the feeling that i was making them sick because I did not catch anything. I really thought I would get sick but nope they get horrible colds and I am fine that way. I did ride a roller coaster and it hit my stomach (the bar) and have had stomach pain since on the same lump that is nothing (well first a hernia possibly, than my aeorta but in thin people its that way and than I got the abdominal seperation). All is I know now is it hurts and its hard (the lump). But what can I do if they don't know and my husband was gonna take me to the hospital I guess but it would be the same thing and once I get up out of bed it eases off. I just hope they find something soon to explain all of this so I do not have to walk around layered in clothing because I am freezing and do not want anyone to see my bones. I have a colonoscopy scheduled in a week or so but if they cannot give me anything more than I cannot be that awake for it the endoscopy was hard enough as I had trouble swallowing the tube and the other just freaks me out period. I called but the lady said ask when you get here and I think it is to just get me there. So, that test may not happen if that is all they can do.Thanks for the replies
    Anonymous 42789 Replies
    • November 25, 2006
    • 06:13 AM
    • 0
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  • They ran the thyroid tests and said they were normal they did that with my mom too and a year later her thryroid was killed with radiation.I am extremely sensitive to cold but not to heat, I freeze to the bone and often have to take a very hot shower or bath to get warm. That started about 40lbs ago and remains. I am irritable sometimes which is not normal for me but has been that way since the brain injury (mild TBI). I have pain now in my stomach, after hitting the bar on the roller coaster and you could feel and see the lump got really hard and bulky I guess. The only other mood changes is due to not sleeping a lot and frustration with the medical profession and not getting answers. I called to see what they were going to give for the colonoscopy and I was irritated when the lady said you can talk to them when you get here. I wanted to know now before I have to take that medication for a day that cost near $70 and we have good insurance. I am also very sensitive or used to be to medication. I tried the low dose birth control about 10 years ago and my body reacted like I was pregnant, I leaked milk and my prolactin levels were high so they thought pituatary tumor but it was not. There was something on the CT but not the MRI. I have never taken it again. Same with alcohol I do not drink because I have almost an allergic reaction and just a little bit makes it look like I have had a bunch. My grandma was the the same way. We are at a loss, even my sz o pants I have to wear a belt and I think soon I will be in the kids department if that is what comes before a 0. It is gross and I never thought I would say this but i rather be huge than look like a skeleton. And maybe the problem started while I was pregnant because for the first mmmm rough guess here five or six months I could not gain much weight but was not losing but the OB/PCP put me on ensure. My first child I gained a lot of weight without any problem it just piled on but not this time. Eventually, though I gained around 40 lbs this time because a couple months it was like 10 lbs a month and the ensure was stopped. I gained while breast feeding which is normal for me as that was the same with my first. Then June was when I weighed 180 or July. So, it slows down now but than out of the blue it will be five lbs a week and when its slow like two lbs or so. Its hard to really keep track and I try to avoid the scale becaue I do not want to know.My legs are covered in bruisies but they say that those tests were normal too. My skin is pale (sometimes scary pale), but no hair loss (I get it thinned because it is so thick), nails are hard as a rock but you can see my veins get very blue and pronounced I guess if I lean back you can see what looks like every vein on my chest, stomach and arms. It looks like a map.MY heart has not been really looked at and sometimes it does feel like it hurts I guess, if they are telling me thats my aeorta that is the lump. But again they say that is normal in thin people. It does not race that I notice but than again when it was resting at 160 or so I hardly noticed (that was when they tried nortryptiline mmm 2 years ago for migraine management). The recennt EKG in June (late) or July said borderline QT waves, unconfirmed dx. Have any idea what that means?? I got my biopsy results from the endoscopy and of course normal.Still clueless but thanks for the replies, I am getting more assistance here than anywhere else.
    Anonymous 42789 Replies
    • November 26, 2006
    • 06:56 PM
    • 0
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