Discussions By Condition: I cannot get a diagnosis.

Opinions Please

Posted In: I cannot get a diagnosis. 35 Replies
  • Posted By: mz ldh
  • October 14, 2007
  • 03:43 AM

Ok, I posted a thread a couple of months ago, but I can't find it now. Anyways, I'm going to listed my symptoms again and give you guys an update. I would really like some opinions/ suggestions.

Started with:
Intolerance to Cold
Diarrhea (no matter what I eat)

Now:
Hair loss
Muscle Weakness
No periods since stopping Depo August 2006
Breast Discharge
Reoccurring UTI's

I had a lot of suggestions of something related to my thyroid, lyme disease, and maybe PCOS or endemetriosis. Most recently, I've seen a Urologist who thinks my uti problems are related to my "grave lack of estrogen". The new special gyn I saw 2 weeks ago, thinks all my problems are related to the depo. He advised me the breast discharge is normal, My labs are normal, and it could take up to 18 months for the depo to wear off. I wasn't very happy when I left his office and I pretty much had made up my mind I was going to live with my problems and not go back to another dr. Then on Thursday, I woke up, started getting ready for work and I was fine for about 5 minutes. Then I suddenly, heard a loud buzzing sound and my left leg became weak and I fell. My left arm and leg both were really weak. I fell and dropped several things trying to get ready. So, I'm not a stupid person, but I am extremely exhausted with drs. So, I didn't seek immediate medical attention. I went to work instead. We have two drs on staff at the insurance company I work for. So per my boss's request one of them came down and gave me the look over. He suggested I seek medical attention. So, I called and made an appointment with my neuro, because my PCP always passes the buck to someone else. Before I made it to the neuro I threw up 3 times. I got really scared at that point, because I never throw up. My bf went with me to the dr and he was freaking out once he saw how sick I was. The neuro did an exam and then sent us to the ER. My bp dropped 15pts from laying down to standing up. He said I probably needed fluids. While in the ER, they did the usual blood work, CT, and EKG. As usual they gave me the "you are too young to have these problems" (I'm 26) and I as usual wanted to say, well damnit I do have them, now what?! After giving me fluids, I could stand, walk albeit wabbly, and write again.So they sent me home to rest with no explanation. I was just told I had low bp due to being dehydrated. To be honest, I'm not really sure how I got dehydrated. My bf thinks that I have "situational anorexia" because I've been so afraid to eat. I think it's a possiblity, but there are also a lot of other possiblities too. So my question to the forum is what do you think? If anyone does think it's anorexia, please send me some links. I'm really interested in trying to take my food in-take. Thanks!

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35 Replies:

  • You need to see an endocrinologist. Including my own, I have heard at least 2 dozen nightmare stories about long acting birth control pills. I cant believe the FDA isn't aware of this, and I don't understand why they're still on the market.
    Anonymous 42789 Replies
    • October 14, 2007
    • 04:49 AM
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  • Yes, your blood pressure can be low from dehydration. Do some follow up visits with an internist. It could be a muscle in your heart, but most likely, dehydration if you know it to be a fact that you are dehydrated.
    Monsterlove 2921 Replies
    • October 14, 2007
    • 06:50 AM
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  • My PCP is an Internist and he always passes the buck to a specialist. I think my only option at this point is to try an endocrinologist. I've thought about it several times, because all my drs keep saying my problems are coming from some type of hormone imbalance, but none can say what hormone isn't in balance. I really don't believe I was dehydrated. On Wednesday, I ate three meals and drank thru out the day. I usually only snack for breakfast & lunch and eat dinner. But I do drink usually favored water, kool-aid, or milk. I've had this routine for 10 years now. During college I lived off of honey buns and Coke. I would've thought if I was going to pass out and have numbness in the left side of my body, it would've been then. So, it doesn't sound like anyone thinks this is anorexia then??? What is the possiblity that this will happen again? How long does it take a person to become that dehydrated to pass out and how long should recovery be? Also, another piece of information, I fell again today. I was putting my weight on my left leg making a step-up and it was like it wasn't there. Any other help/suggestions/ comments would be great. Thanks!
    mz ldh 24 Replies
    • October 15, 2007
    • 00:28 AM
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  • I do believe the anorexia is affecting the picture, as is the diarrhea. I think you're not absorbing enough nutrition, which may well be contributing to the leg weakness symptoms. In addition to the Endo, I'd suggest you see a GI doc. You may have celiac disease (which often travels with hormone problems).
    Anonymous 42789 Replies
    • October 15, 2007
    • 03:36 PM
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  • Currently, I see a PCP, Gastro, Neuro, Urologist, and a GYN who specializes in infertility. Our dr at work cam by to check on me this morning and he thinks I need to see an endo also. I called my neuro back to see what his take is on everything and to also see if he will do the referral. I haven't heard back from him yet... Patiently waiting...
    mz ldh 24 Replies
    • October 15, 2007
    • 05:38 PM
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  • I talked to my neuro today. (And yes he actually called me himself) He hadn't received my labs from the ER yet, but suggested that I also see a cardiologist. The neuro's office is suppose to set that up and he wants me to have an echo. So, here's my question to the forum, what could I possibly have that relates to all my sxs that involves my heart? I've never thought about heart problems being related to these sxs. Any ideas would be helpful. I'm trying to prepare myself for this appointment and I know the more educated I am the better. Thanks
    mz ldh 24 Replies
    • October 17, 2007
    • 01:54 AM
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  • Did you ask the neuro that question? What did he say?
    Anonymous 42789 Replies
    • October 17, 2007
    • 02:02 AM
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  • Celiac Disease could be the source of your body not being able to get enough nutrition: Celiac disease is a digestive disease that damages the small intestine and interferes with absorption of nutrients from food. People who have celiac disease cannot tolerate a protein called gluten, found in wheat, rye, and barley. Gluten is found mainly in foods but may also be found in products we use every day, such as stamp and envelope adhesive, medicines, and vitamins.When people with celiac disease eat foods or use products containing gluten, their immune system responds by damaging the small intestine. The tiny, fingerlike protrusions lining the small intestine are damaged or destroyed. Called villi, they normally allow nutrients from food to be absorbed into the bloodstream. Without healthy villi, a person becomes malnourished, regardless of the quantity of food eaten. Because the body’s own immune system causes the damage, celiac disease is considered an autoimmune disorder. However, it is also classified as a disease of malabsorption because nutrients are not absorbed. Celiac disease is also known as celiac sprue, nontropical sprue, and gluten-sensitive enteropathy.Celiac disease is a genetic disease, meaning it runs in families. Sometimes the disease is triggered—or becomes active for the first time—after surgery, pregnancy, childbirth, viral infection, or severe emotional stress. Celiac disease affects people differently. Symptoms may occur in the digestive system, or in other parts of the body. For example, one person might have diarrhea and abdominal pain, while another person may be irritable or depressed. In fact, irritability is one of the most common symptoms in children.Symptoms of celiac disease may include one or more of the following:gasrecurring abdominal bloating and painchronic diarrheaconstipationpale, foul-smelling, or fatty stoolweight loss/weight gainfatigueunexplained anemia (a low count of red blood cells causing fatigue)bone or joint painosteoporosis, osteopeniabehavioral changestingling numbness in the legs (from nerve damage)muscle crampsseizuresmissed menstrual periods (often because of excessive weight loss)infertility, recurrent miscarriagedelayed growthfailure to thrive in infantspale sores inside the mouth, called aphthous ulcerstooth discoloration or loss of enamelitchy skin rash called dermatitis herpetiformisRecognizing celiac disease can be difficult because some of its symptoms are similar to those of other diseases. In fact, sometimes celiac disease is confused with irritable bowel syndrome, iron-deficiency anemia caused by menstrual blood loss, Crohn’s disease, diverticulitis, intestinal infections, and chronic fatigue syndrome. As a result, celiac disease is commonly underdiagnosed or misdiagnosed.Recently, researchers discovered that people with celiac disease have higher than normal levels of certain autoantibodies in their blood. Antibodies are protective proteins produced by the immune system in response to substances that the body perceives to be threatening. Autoantibodies are proteins that react against the body’s own molecules or tissues. To diagnose celiac disease, physicians will usually test blood to measure levels ofImmunoglobulin A (IgA)anti-tissue transglutaminase (tTGA)IgA anti-endomysium antibodies (AEA)Before being tested, one should continue to eat a regular diet that includes foods with gluten, such as breads and pastas. If a person stops eating foods with gluten before being tested, the results may be negative for celiac disease even if celiac disease is actually present. these sound like all the symptoms you have told us about, i think you should be tested for Celiac Disease
    Anonymous 42789 Replies
    • October 17, 2007
    • 06:58 PM
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  • Celiac Disease, this explains just about all of your symptoms. Celiac disease is a digestive disease that damages the small intestine and interferes with absorption of nutrients from food. People who have celiac disease cannot tolerate a protein called gluten, found in wheat, rye, and barley. Gluten is found mainly in foods but may also be found in products we use every day, such as stamp and envelope adhesive, medicines, and vitamins When people with celiac disease eat foods or use products containing gluten, their immune system responds by damaging the small intestine. The tiny, fingerlike protrusions lining the small intestine are damaged or destroyed. Called villi, they normally allow nutrients from food to be absorbed into the bloodstream. Without healthy villi, a person becomes malnourished, regardless of the quantity of food eaten. Because the body’s own immune system causes the damage, celiac disease is considered an autoimmune disorder. However, it is also classified as a disease of malabsorption because nutrients are not absorbed. Celiac disease is also known as celiac sprue, nontropical sprue, and gluten-sensitive enteropathy.Celiac disease is a genetic disease, meaning it runs in families. Sometimes the disease is triggered—or becomes active for the first time—after surgery, pregnancy, childbirth, viral infection, or severe emotional stress. Celiac disease affects people differently. Symptoms may occur in the digestive system, or in other parts of the body. For example, one person might have diarrhea and abdominal pain, while another person may be irritable or depressed. In fact, irritability is one of the most common symptoms in children.Symptoms of celiac disease may include one or more of the following:gasrecurring abdominal bloating and painchronic diarrheaconstipationpale, foul-smelling, or fatty stoolweight loss/weight gainfatigueunexplained anemia (a low count of red blood cells causing fatigue)bone or joint painosteoporosis, osteopeniabehavioral changestingling numbness in the legs (from nerve damage)muscle crampsseizuresmissed menstrual periods (often because of excessive weight loss)infertility, recurrent miscarriagedelayed growthfailure to thrive in infantspale sores inside the mouth, called aphthous ulcerstooth discoloration or loss of enamelitchy skin rash called dermatitis herpetiformisA person with celiac disease may have no symptoms. People without symptoms are still at risk for the complications of celiac disease, including malnutrition. The longer a person goes undiagnosed and untreated, the greater the chance of developing malnutrition and other complications. Anemia, delayed growth, and weight loss are signs of malnutrition: The body is just not getting enough nutrients. Malnutrition is a serious problem for children because they need adequate nutrition to develop properly Recognizing celiac disease can be difficult because some of its symptoms are similar to those of other diseases. In fact, sometimes celiac disease is confused with irritable bowel syndrome, iron-deficiency anemia caused by menstrual blood loss, Crohn’s disease, diverticulitis, intestinal infections, and chronic fatigue syndrome. As a result, celiac disease is commonly underdiagnosed or misdiagnosed.Recently, researchers discovered that people with celiac disease have higher than normal levels of certain autoantibodies in their blood. Antibodies are protective proteins produced by the immune system in response to substances that the body perceives to be threatening. Autoantibodies are proteins that react against the body’s own molecules or tissues. To diagnose celiac disease, physicians will usually test blood to measure levels ofImmunoglobulin A (IgA)anti-tissue transglutaminase (tTGA)IgA anti-endomysium antibodies (AEA)Before being tested, one should continue to eat a regular diet that includes foods with gluten, such as breads and pastas. If a person stops eating foods with gluten before being tested, the results may be negative for celiac disease even if celiac disease is actually present. The only treatment for celiac disease is to follow a gluten-free diet. When a person is first diagnosed with celiac disease, the doctor usually will ask the person to work with a dietitian on a gluten-free diet plan. A dietitian is a health care professional who specializes in food and nutrition. Someone with celiac disease can learn from a dietitian how to read ingredient lists and identify foods that contain gluten in order to make informed decisions at the grocery store and when eating out.For most people, following this diet will stop symptoms, heal existing intestinal damage, and prevent further damage. Improvements begin within days of starting the diet. The small intestine is usually completely healed in 3 to 6 months in children and younger adults and within 2 years for older adults. Healed means a person now has villi that can absorb nutrients from food into the bloodstream.In order to stay well, people with celiac disease must avoid gluten for the rest of their lives. Eating any gluten, no matter how small an amount, can damage the small intestine. The damage will occur in anyone with the disease, including people without noticeable symptoms. Depending on a person’s age at diagnosis, some problems will not improve, such as delayed growth and tooth discoloration.Some people with celiac disease show no improvement on the gluten-free diet. This condition is called unresponsive celiac disease. The most common reason for poor response is that small amounts of gluten are still present in the diet. Advice from a dietitian who is skilled in educating patients about the gluten-free diet is essential to achieve the best results.Rarely, the intestinal injury will continue despite a strictly gluten-free diet. People in this situation have severely damaged intestines that cannot heal. Because their intestines are not absorbing enough nutrients, they may need to receive nutrients directly into their bloodstream through a vein, or intravenously. People with this condition may need to be evaluated for complications of the disease.
    Anonymous 42789 Replies
    • October 17, 2007
    • 08:35 PM
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  • oops, sorry for double post. i double clicked the post message button. very sorry about that
    Anonymous 42789 Replies
    • October 17, 2007
    • 10:15 PM
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  • If the low blood pressure isn't caused from dehydration, there could be a problem with a muscle in your heart; that is why the referral.
    Monsterlove 2921 Replies
    • October 18, 2007
    • 00:28 AM
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  • Now my question for you is: Did the ER (or someone else) run a thyroid pannel. I mean TSH, free T4, and T3. If so, can you post the levels? Every individual is different and levels that appear within the normal range aren't normal for them. I'm the case in point here because I was told I'm always going to be hypothyroid and then low and behold this week they finally decided my thyroid is overactive now. This is after being told for 3 months that the meds just needed to be adjusted.
    Anonymous 42789 Replies
    • October 18, 2007
    • 06:59 AM
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  • Fauve- the neuro was very careful to not make any suggestions or give any indications of what he thought it could be. Eboli- thanks for the information on Celiac Disease. I'll ask my gastro about it on my next visit. MonsterLove- I think you are right about checking the strength of my heart muscles. I just wished I had some idea of whether or not these are related to my other problems. In an interesting twist, I had a "period" this morning. I bleed for less than 4 hours and it wasn't much at all. I'm pretty sure I actually ovulated this month and if I did, this would be the correct time for a period. In a way, it made me feel somewhat normal again. I also wanted to tell everyone, that when they took my blood at the ER they had a difficult time. It wasn't because they couldn't find a vein, it was just extremely slow coming out. I wonder if you have low blood pressure if it will decease the flow of you blood when you have it drawn? It was so slow that my bf and the nurse had a conversation about it, but she didn't offer any suggestions. Thanks everyone for the comments/ suggestions. Please let me know if you have anything else to add.
    mz ldh 24 Replies
    • October 18, 2007
    • 11:34 PM
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  • Some women have delicate veins, like babies, and it may be difficult to get a reading just because of the delicate veins (which I have)...only half of them will get it correct and the other half are not listening for the correct beat. Some of the machines will give a good reading and some just say "error"...Take your concerns to further specialists; they should be able to answer your questions.
    Monsterlove 2921 Replies
    • October 19, 2007
    • 01:48 AM
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  • My appointment with the cardio is this Wednesday. I'll try to post a reply asap. For the person who asked about my Thyroid results, I'll try to get those and post them also. I was wondering is it possibly to rapid cycle between having an underactive and then overactive thyroid? I asked this before and didn't get a response, but it seems like we have people with more experience on that topic now posting. I welcome any comments or additional suggestions.
    mz ldh 24 Replies
    • October 23, 2007
    • 01:35 AM
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  • I saw the cardio this morning. She doesn't think I have any problems with my heart, but she is doing a TEE next Tuesday. She told me that she thinks I had a minor stroke due to starting to take birth control pills the month before. She said all my sxs fit having a stroke. So, she has ordered an MRI/MRA to be done asap and wants me to take the scans with me and go back to the neuro. I'm fine with her suggestion, but this has been a lot to digest. I thought strokes from bcp were rare. I'm also wondering what are the chances of this reoccurring? I stopped taking the bcps the week before this episode. I still can tell a difference in the way my left side feels compared to the right side. If I did have a stroke, then I'm assuming that's not going to change. If anyone can make any suggestions on what resources I should use to get information on strokes or anyone that has personal experiences, I would appreciate hearing from you.
    mz ldh 24 Replies
    • October 24, 2007
    • 11:37 PM
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  • Cardiologist sounds like she's on the ball. Now that I read your original post again, it does sound like a mild stroke and stopping the pill could have triggered it....another nightmare birth control pill story :( I don't know if this will help, but my husband had a mild stroke about 4 years ago - he's healthier now than ever and the doctors take any medical concern of his very seriously now - you get a certain medical cred for being able to say you had one, especially when you're young. No one will ever tell you again that a symptom you're concerned about is caused by stress or is all in your head.
    Anonymous 42789 Replies
    • October 25, 2007
    • 01:28 AM
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  • It's a side effect from the drug. Yes, it can be dangerous. Also, please get a mammo; I don't care what age your are.
    Monsterlove 2921 Replies
    • October 25, 2007
    • 05:42 AM
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  • I was wondering is it possibly to rapid cycle between having an underactive and then overactive thyroid?Yes, this is very possible.You can also have the symptoms at the same time and they cancel each other out.When the thyroid is failing, one will frequently go back and forth between normal, overactive, and underactive thyroid.
    Anonymous 42789 Replies
    • October 25, 2007
    • 09:19 AM
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  • Fauve, thank you for telling me about your husband. As strange as this sounds, I knew something was wrong, before the dizzy episode. My IBS wasn't giving me any problems. The intolerence to cold wasn't present. I actually felt somewhat normal, till I hit the floor!. I'm still not having IBS type problems. I'm not sure about the coldness, because we just had a cold snap in my area. My biggest complaint is the weakness and the minor headache I've had since the episode. I do know what you are referring to with finally being taken seriously. I think once drs can put a label on what's wrong with you and it's not a run of the mill problem, then you finally are taken seriously. MonsterLove, thank you for the suggestion on the mammo. I've been considering it for the last month. I know that all illnesses can cross the normal age guidelines. I'm living proof of that. My problem with getting the mammo is my insurance in not going to pay for it, because of those age guidelines. I'm accruing massive medical bills even though I have insurance. :mad: DXD, thank you for answering my question regarding the rapid cycling of the thyriod. I'll post again once I have an update. The cardio's office wants me to have the MRI/MRA done asap. They are waiting on insurance approval, which I hope comes quickly.
    mz ldh 24 Replies
    • October 25, 2007
    • 06:28 PM
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