Discussions By Condition: I cannot get a diagnosis.

20 years old and chronic, severe symptoms.

Posted In: I cannot get a diagnosis. 154 Replies
  • Posted By: RachelBullets
  • February 28, 2008
  • 11:30 AM

Hi. I turn 20 years old on March 11th, and I've already had to quit my job due to medical issues.

It started about 7 months ago with what seemed like a bladder infection. Suddenly, I suffered dizziness, vomiting, excruciating abdominal pain, and nausea. I was sent to the ER, to no avail. My symptoms have been getting progressively worse - headaches, seizures, diarrhea, I've stopped digesting food, weight loss of about 10 lbs., the nausea and vomiting have become chronic, episodic appetite loss, weakness, fatigue, severe anemia, erratic and heavy menstrual cycles, bleeding gums and occasional mouth sores, swollen and tender glands, increased urination.

I've had an upper endoscopy which showed nothing, blood tests show only my anemia. My doctor thinks I have pancreas and gallbladder problems, but the blood test for my pancreas was normal, and I'm worried my HIDA scan for my gallbladder will be, too.

I'm just experiencing symptoms all over the board, and they continue to get worse. Any advice? Anyone been there? I'm ready to give up...I'm only 20 years old and already require 15 per day. :(:confused:

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  • Because you have both psych symptoms and severe abdominal pain (the number one porphyria symptom is severe abdominal pain bt. )your dr should screen you for porphyria which is a genetic metabolic disease. Porphyria attacks can get triggered by many things such as the hormonal changes entailed when a woman enters adulthood, has a baby. You also shoul look into digestive/metabolic diseases like UC and Crohns disease. And Wilsons. http://www.druginfonet.com/index.php?pageID=faq/new/DISEASE_FAQ/Porphyria.htm I found this link tonight....NY Times Article on Porphyria:http://health.nytimes.com/health/guides/disease/porphyria/overview.html Some medicines can trigger porphyria attacks, and porphyria patients must learn to avoid them. high protein low carb diets can trigger porphyria attacks also. http://goldbamboo.com/topic-t1641-a1-6Porphyria.html Other illnesses to look into would be auto immune ones like ulcerative colitis and crohns disease; which can be associated with porphyria. Though this is a life long disease it can be managed if you have it, and you can live a long life but you must try to avoid triggers whenever you can. Many medicines can trigger porphyria attacks so check the databases on them and avoid taking porphyrgenic drugs unless absoulutely necessary would be my advice. Don't stop any meds without talking to a dr either; with some meds you can get very sick if you stop them suddenly. What meds are you on now???? I have porphyria and went through what you are going through now when I was a young adult. I left college when I got too sick, my gall bladder stopped working and had to be removed. Every single one of your symptoms I have had at your age. Your story is similar to other porphyria patients. http://www.porphyriafoundation.com/pat_stories/index.html Porphyria links:http://www.porphyriafoundation.com/about_por/index.htmlhttp://www.porphyriafoundation.com/about_por/drugs/drugs01.htmlYou can find support groups at Yahoo. Hi. I turn 20 years old on March 11th, and I've already had to quit my job due to medical issues. I have had all the symptoms below also during bad attacks... some can be from getting dehydrated or over-hydrated. With your significant health problems learning to be properly hydrated my help reduce some of the spasms and cramping. http://rehydrate.org/dehydration/http://www.medicinenet.com/dehydration/article.htmhttp://www.symptomsofdehydration.com/http://www.quickcare.org/gast/dehydrate.html I have had every one of your symptoms... my first attack was about the same age as you are at now. Gallbladder removed at age 22.It started about 7 months ago with what seemed like a bladder infection (infections and antibiotics can trigger porphyria) . Suddenly, I suffered dizziness, vomiting, excruciating abdominal pain, and nausea. I was sent to the ER, to no avail. My symptoms have been getting progressively worse - headaches, seizures, diarrhea, I've stopped digesting food that happened to me, weight loss of about 10 lbs., the nausea and vomiting have become chronic, episodic appetite loss, weakness, fatigue, severe anemia, erratic and heavy menstrual cycles, bleeding gums and occasional mouth sores, swollen and tender glands, increased urination. I've had an upper endoscopy which showed nothing, blood tests show only my anemia. My doctor thinks I have pancreas and gallbladder problems, but the blood test for my pancreas was normal , and I'm worried my HIDA scan for my gallbladder will be, too. My bloodtests weren't bad even atbarely functioning gallbladder.... the hida scan got the dx as when they injected CK only 5% of the bile left the gallbladder.So the bloodtests mean little for some people. I'm just experiencing symptoms all over the board, and they continue to get worse. If you have an acute porphyria, you can get better. and you may not have other attacks if you avoid triggering attacks.Given your history.... AVOID ALCOHOL AND UNECESSARY DRUGS; USE THE SAFER DRUGS FOR PORPHYRIA FOLKS in the porphyria drug databases on the site listed below. Any advice? Staying hydrated and nourished helps. Learn how to keep your electrolytes up; without getting dehydrated or overhydrated. Anyone been there? Me.;) I'm ready to give up...I'm only 20 years old and already require 15 per day. 15 what per day???? If pills that could be a big part of your problem.You may be taking drugs that are triggering your illness.Any family hx of the same sorts of problems?What drugs are you on? If you do have porphyria... know that depression is common with porphyria patients due to the pain and significant impact on a patients life; seek counseling to help you deal with the illness. You can pull through this and have many good times between any attacks. You sound depressed and quite ill with something affecting your nerve and GI system; I do recommend you find a great counselor for support. Hugs. tdwi ;) :(:confused:
    TaylorDeelwithit 382 Replies
    • February 28, 2008
    • 00:47 PM
    • 0
    Flag this Response
  • Another electrosensitive Lymie, I see... Click on "symptoms": http://www.canlyme.com/ When to Suspect Lyme: http://www.angelfire.com/biz/romarkaraoke/whento.htm Lymenet: http://flash.lymenet.org/ubb/ultimatebb.php Post that you need to find a Lyme Literate Medical Doctor and a reliable lab. You will need to be tested for Lyme and all coinfections. Do you have Microwave/EMR Sickness? http://f1.grp.yahoofs.com/v1/MLqvR8GaZldTPvsXLf1-4gU0LwqA1kYRuSE-VAw9XhO62B0j6NAn2yQVmBOGEPMVURb8vJp8xVS8z1HsPHE-w4wlPRYN6b3JvQ/Do%20You%20Have%20Microwave%20Sickness.pdf Electrical Sensitivity & Hypersensitivity: http://www.ei-resource.org/illness-information/related-conditions/electrical-sensitivity-&-hypersensitivity/ Bioinitiative Report: http://www.bioinitiative.org/report/index.htm ****s.... *****t... i can guess what you will post in my thread
    LymeTime 65 Replies
    • February 28, 2008
    • 09:16 PM
    • 0
    Flag this Response
  • I currently take reglan and compro for nausea, atropine for cramps and spasms, and creon . Because you have both psych symptoms and severe abdominal pain (the number one porphyria symptom is severe abdominal pain bt. )your dr should screen you for porphyria which is a genetic metabolic disease. Porphyria attacks can get triggered by many things such as the hormonal changes entailed when a woman enters adulthood, has a baby. You also shoul look into digestive/metabolic diseases like UC and Crohns disease. And Wilsons. http://www.druginfonet.com/index.php?pageID=faq/new/DISEASE_FAQ/Porphyria.htm I found this link tonight....NY Times Article on Porphyria:http://health.nytimes.com/health/guides/disease/porphyria/overview.html Some medicines can trigger porphyria attacks, and porphyria patients must learn to avoid them. high protein low carb diets can trigger porphyria attacks also. http://goldbamboo.com/topic-t1641-a1-6Porphyria.html Other illnesses to look into would be auto immune ones like ulcerative colitis and crohns disease; which can be associated with porphyria. Though this is a life long disease it can be managed if you have it, and you can live a long life but you must try to avoid triggers whenever you can. Many medicines can trigger porphyria attacks so check the databases on them and avoid taking porphyrgenic drugs unless absoulutely necessary would be my advice. Don't stop any meds without talking to a dr either; with some meds you can get very sick if you stop them suddenly. What meds are you on now???? I have porphyria and went through what you are going through now when I was a young adult. I left college when I got too sick, my gall bladder stopped working and had to be removed. Every single one of your symptoms I have had at your age. Your story is similar to other porphyria patients. http://www.porphyriafoundation.com/pat_stories/index.html Porphyria links:http://www.porphyriafoundation.com/about_por/index.htmlhttp://www.porphyriafoundation.com/about_por/drugs/drugs01.htmlYou can find support groups at Yahoo.
    RachelBullets 120 Replies Flag this Response
  • I currently take Reglan and Compro for nausea, Creon to help digest food, Atropine for abdominal cramps and spasms, and the birth control Lybrel to try and control my menstrual cycles. None of the medications work. I also recently found out my hemoglobin level is a 10 - 10.5 when the low-normal range is 11 - 11.5
    RachelBullets 120 Replies Flag this Response
  • look into diabetes and impaired glucose tolerance. Also look into SIBO; small intestinal bacterial overgrowth. http://www.emedicine.com/MED/topic198.htm http://www.medscape.com/viewarticle/544511 http://www.medicinenet.com/small_intestinal_bacterial_overgrowth/article.htm http://en.wikipedia.org/wiki/Small_bowel_bacterial_overgrowth_syndrome I currently take Reglan and Compro for nausea, Creon to help digest food, Atropine for abdominal cramps and spasms, and the birth control Lybrel to try and control my menstrual cycles. None of the medications work. I also recently found out my hemoglobin level is a 10 - 10.5 when the low-normal range is 11 - 11.5
    TaylorDeelwithit 382 Replies Flag this Response
  • Did they check the thyroid also? I currently take Reglan and Compro for nausea, Creon to help digest food, Atropine for abdominal cramps and spasms, and the birth control Lybrel to try and control my menstrual cycles. None of the medications work. I also recently found out my hemoglobin level is a 10 - 10.5 when the low-normal range is 11 - 11.5
    TaylorDeelwithit 382 Replies Flag this Response
  • get your urine checked for e coli...
    Monsterlove 2921 Replies Flag this Response
  • I'm not diabetic or anything like that, already been tested.No, they haven't checked my thyroid, but a blood test from just the other day showed I have elevated liver enzymes.
    RachelBullets 120 Replies Flag this Response
  • check out my post right above yours (19yo....).Similar issues; I TOTALLY know what you are going through, unfortunately.
    talkispoison 1 Replies Flag this Response
  • Sounds like you have one big thing going on causing many different problems. Sometimes it can help to come to the bigger diagnoses by working out what all the little diagnostic things are coming into it. When you say your menstrual cycle is heavy and erratic.. what do you mean by that exactly? (too heavy periods ive read can cause anemia.. and when you say heavy and erratic it could also mean that you have something like PCOS involved.. but you need to give out more info about your cycle before i could say that is a possibility). So how long and short are your cycles? and are you actually missing your period at times? diarrhea, I've stopped digesting food, weight loss of about 10 lbs Irritable bowel syndrome may cause many of your symptoms.. IBS often can occur in many autoimmune illnesses etc. I strongly suggest you to go and see an gastro. specialist. to find out if you now have IBS or something else going on there. Describe your fatigue? When does it occur etc, are you waking up tired? is the fatigue post excertional? Are you suffering from memory loss and confusion with your illness as well? If you are not absorbing your food, you may also get deficiencies developing..which may cause other symptoms (depending what the deficiency is). If you are also bruising very easily....be aware that Vit C deficiency can cause heavy menstration with clots, swollen beeding gums and anaemia (but obviously you have more than anything like just that going on). (Make sure you are eatting ripe fruit.. fruit picked green..eg such as is used to make supermarket juices.. dont contain much vitamin C). I suggest you to make sure you are taking a good muti vitamin supplement (but you may not absorb it well anyway but it probably would be much better than nothing).. and also start taking probotics (for the bowel stuff going on).
    taniaaust1 2267 Replies Flag this Response
  • I take a vitamin C supplement 3 times a day, and iron, as well. My periods became weird in just the last couple of months...2 cycles a month, heavy bleeding, etc. I've currently been on my period for 17 days.I went to the gyno in January, all was normal, so he put me on Lybrel to try and regulate my cycle, but it hasn't helped at all. I've always been anemic, but the periods just exacerbate the situation. As far as the fatigue goes, its on and off. Sometimes I just tire more quickly, other times I can't move off of the couch or bed. And yes, I have memory problems. A big concern right now is my chest pain, maybe from the anemia. I also get pins and needles and pain in my arms and legs. IBS was already ruled out. It just sucks because it sounds like something made up and in my head, but it genuinely isn't. My mother is watching her oldest daughter waste away with no explanation.:(
    RachelBullets 120 Replies Flag this Response
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  • Hi Rachel Please check out the Vit B Deficiency thread. I am not a doctor but as you suffer anemia and also seem to have a number of issues related to Vit B then this thread may help you to get some answers. Take Care Sylvs http://forums.wrongdiagnosis.com/showthread.php?t=9948
    Anonymous 42789 Replies Flag this Response
  • What antibiotics did you take for the bladder infection? Have you had a vaginal and lower abdominal ultrasound? If not then you should to rule out fibroids, or cysts. I am confused. You say you went to a gyno in January and "all was normal". Then why did they put you on birth control pills? Have you had problems with your periods before that time? If you are having heavy bleeding it is most likely due to the birth control. Please look up Lybrel, and ALL other meds you are currently taking on www.rxlist.com. I would highly recommend trying a good quality vegetarian digestive enzyme complex over the synthetic med you have been prescribed. Also, you NEED a good quality probiotic. You say your meds aren't working. Then I recommend talking with the doc about discontinuing them. I also recommend finding a good naturopath, wholistic kinesiologist, acupuncturist or other wholistic practitioner to help with your symptoms. Continue getting allopathic testing done, expecially an ultrasound if you haven't yet had one, but find some herbal remedies to help with your symptoms - much gentler and often more effective. I think you should be off the birth control asap with your heavy bleeding. Birth control pills and IUD's often have HORRENDOUS side effects. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • I was already having the abnormal cycles pre-gyno visit, which is WHY he prescribed the birth control pills. All tests he ran came back as normal. I had a pelvic ultrasound in the ER when I was there for severe pelvic and abdominal pain. They also checked for gallstones and kidney stones. No abnormalities. The thing about the "bladder infection" is that it wasn't a bladder infection at all - just the discomfort of one. The urine tests were also normal. I was in the hospital today for bloodwork and an abdominal CT scan, to which I don't find out the results until the 17th, and I also have an abdominal ultrasound and HIDA scan on Monday. All my symptoms kind of come in waves...some days are worse than others. Some are so bad they put me in the ER. I also get fevers once every few days, ranging from 99 degrees to 101. To make things simpler, I'll list ALL of my symptoms:-fever-chronic nausea-abdominal/side pain-back pain-pain in my arms, sometimes legs-tingling in my arms-chronic headaches-slow healing sores-bleeding gums-occasional nosebleeds/coughing up blood-chest pain, sometimes severe-heavy and erratic menstrual cycles-severe anemia that doesn't respond to vitamins-lines in my vision-diarrhea, lack of digestion w/o creon-seizures-muscle spasms-fatigue-weight loss-weakness
    RachelBullets 120 Replies Flag this Response
  • Rachel I posted a thread earlier but it hasn't arrived yet so I will try again!! There is a thread for Vit B Deficiency, please read it as there is a list of symptoms. Have you ever been tested for this? Sylvs
    Anonymous 42789 Replies Flag this Response
  • How elevated? Which ones? Here's a link to check out...http://www.mayoclinic.com/health/elevated-liver-enzymes/HQ01011 I'm not diabetic or anything like that, already been tested.No, they haven't checked my thyroid, but a blood test from just the other day showed I have elevated liver enzymes.
    TaylorDeelwithit 382 Replies Flag this Response
  • Reglan can be a porphyria trigger for some folks. I currently take reglan and compro for nausea, atropine for cramps and spasms, and creon .
    TaylorDeelwithit 382 Replies Flag this Response
  • Given you have elevated liver enzymes and theses symptoms with the pancreas and gall bladder... definetly look into metabolic diseases affecting the liver. Your at an age many genetic diseases affecting the liver and other organs start to surface. Porphyria, many folks gets their first attack at your age. Hi. I turn 20 years old on March 11th, and I've already had to quit my job due to medical issues. It started about 7 months ago with what seemed like a bladder infection. Suddenly, I suffered dizziness, vomiting, excruciating abdominal pain, and nausea. I was sent to the ER, to no avail. My symptoms have been getting progressively worse - headaches, seizures, diarrhea, I've stopped digesting food, weight loss of about 10 lbs., the nausea and vomiting have become chronic, episodic appetite loss, weakness, fatigue, severe anemia, erratic and heavy menstrual cycles, bleeding gums and occasional mouth sores, swollen and tender glands, increased urination. I've had an upper endoscopy which showed nothing, blood tests show only my anemia. My doctor thinks I have pancreas and gallbladder problems, but the blood test for my pancreas was normal, and I'm worried my HIDA scan for my gallbladder will be, too. I'm just experiencing symptoms all over the board, and they continue to get worse. Any advice? Anyone been there? I'm ready to give up...I'm only 20 years old and already require 15 per day. :(:confused:
    TaylorDeelwithit 382 Replies Flag this Response
  • My AST levels were a little high (48 in a normal range of 0-37). No, I haven't been tested for B12 defficiency yet. Thank you guys so much for the help so far!
    RachelBullets 120 Replies Flag this Response
  • Has your iron level been checked regularly? Some porphyria patients do need iron supplements and when they get them it has done oh so carefully. Also don''t take the vit C at the same time as your iron... increases absorbtion of iron too well for some. If you do have porphyria, the iron can get stored in organs like your gallbladder and make them inflammed and even affect how well they work. My gallbladder was functioning at 5%. At your age. I noticed I wasn't digesting food well, like fats and meats. I too was given pancreatic enzymes. My attacks of porphyria have been triggered by certain drugs, infections, and hormones. What you are going through sounds like what I went through in my first years of porphyria. Porphyria can be managed, but it is incurable. But some folks may only have one attack or none even if they have a gene for it. You do sound like porphyria is a possibility, plus it is possible you could have an autoimmune disease. Or both. You should go to your local medical school if you haven yet and get a full out work-up. I am sorry you are so ill. I been there at your age, it is a hard thing to deal with. Hang in there as things can get better for you and if its porphyria you can get over the attack and maybe not have another one or few anyhow with learning to avoid things that trigger attacks. If you had porphyria; sometimes hormones can make it worse and sometimes better. For some porphyria folks it helps to suppress ovulation for instance. I take a vitamin C supplement 3 times a day, and iron, as well. My periods became weird in just the last couple of months...2 cycles a month, heavy bleeding, etc. I've currently been on my period for 17 days.I went to the gyno in January, all was normal, so he put me on Lybrel to try and regulate my cycle, but it hasn't helped at all.Porphyria can do this... I went 59 days without a period a couple months ago. I've always been anemic, but the periods just exacerbate the situation. As far as the fatigue goes, its on and off. Sometimes I just tire more quickly, other times I can't move off of the couch or bed. And yes, I have memory problems. Fatigue is common with porphyria and other metabolic diseases. For one thing your body isn't digesting its foods properly. A big concern right now is my chest pain, maybe from the anemia. I also get pins and needles and pain in my arms and legs.Chest pain is a very common porphyria symptom. IBS was already ruled out. *Many porphyria folks also have had the diagnosis IBS. And their is a connection with auto immune diseases like IBD, ulcerative colitis have a higher rate of porphyria and families with UC should be screened for porphyria. It just sucks because it sounds like something made up and in my head, but it genuinely isn't. My mother is watching her oldest daughter waste away with no explanation (common with porphyria, it is hard for the families to see their loved ones get sicker from porphyria attacks).:(
    TaylorDeelwithit 382 Replies Flag this Response
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