Discussions By Condition: I cannot get a diagnosis.

Please help me

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: Rose1001
  • February 18, 2008
  • 03:16 AM

I'm new to the concept of asking others for their opinions and advice so please bare with me. I'm a 21 year old female that until recently was an avid health and fitness junkie. For the past year I've had fatigue and about four months ago I've had sporatic symptoms that seem to progressively grow in strength and numbers. Doctors have so far told me that I'm getting older (I laugh at that), I'm depressed (right, I am the happiest I've ever been in my entire life with the exception of my ailments), and I've been told that I'm simply a woman with PMS with a mild case of sinusitis (yet I have no symptoms of sinusitis).

In the past doctor's visits were rare unless in need of a course of antibiotics, but recently I've been to about 6 different Doctor's with two of them being trips to the ER in the past month and a half. All of which have simply waived my symptoms off because I "should" be healthy with my lifestyle and current age.

I suppose I am in need of some advice on where to go from here. I do at this point have appointments with a neurologist, endocrinologist, and lupus specialist but have yet to attend them and have no idea if any of them are the correct place to start...I guess I am just going wherever they will see me so that I may get answers or at least an educated guess at the best possible answer.

Here are my symptoms and lab result findings.
SYMPTOMS
-Extream Fatigue
-Frequent Urination (one doctor classified this condition as polyuria)
-Pressure headaches located on top of the right side of my head (same location that sometimes swells but not near sinus points-i.e. temples eye/facial area)
-sporatic dizziness
-sporatic confusion
- sporatic blood pressure
-sporatic blood sugar (non-diabetic but odd and extream flucuations within normal limits)
-numbness down the right side of spine
-sporatic ear "ache" (more like a swollen bruised feeling, not completely inside the ear and doctors saw no signs of infection)
-pale skin
-photo sensitivity (bright light bothers me more than it used to)
-difficulty concieving after 2 years of trying
- nose bleeds (not blood flow, but when I blow my nose sometimes I will blow out a pool of blood and that will be the end of it for a few days- it has happened three times)

Lab Findings
-30mg protien in Urine (doctor said that it is "probably normal"
-blood in cloudy Urine (no sign of UTI but treated for it "just in case")
- normal kidney/liver chemical results
- negative mono test
- normal thyroid (Free T4 and TSH results)
-CT scan found "possible sinusitus" (doctor said he "thinks" it is probably just a sinusitus {code for he isn't sure lol})

Medications
50mg zoloft for mood swings (i've been on it and am used to it, with no negative side effects)

History
No history of major illnesses
Family History of : breast cancer, factor V leiden, and lupus

Please, if anyone has had similiar experiences or has thoughts of what it sounds like it "might be" anything would be appriciated. I need advice and help, I feel like I'm going crazy and that if one more doctor says I'm depressed and dismisses my other symptoms as nothing (since depression doesn't explain the protien, numbness, and many other symptoms) that I will soon dive into depression lol.

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7 Replies:

  • No tests for other infections or virus'??
    Anonymous 42789 Replies
    • February 19, 2008
    • 10:52 AM
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  • No, the doctors haven't taken any other tests, I'm originally from the north (Seattle) but have taken note, to myself, that the south is quick to put kids on riddaline and women on antidepressants. I've been to 5 different doctors and 3 of them, all men, said that I am " a woman afterall- it isn't uncommon to find women who are depressed....housewives tend to be uhrm (pause for dramatic effect) hormonal and sometimes THINK they are sick when they are just depressed" The doctors have so far been reluctant to do any tests on me even though they all clearly admit that my symptoms are irregular and odd. I am trying a new doctor who I will ask about the Lyme disease possibility. I never would have thought of that. I never had a rash though ( i did see that sometimes patients don't recall having that though). You Have no idea how much I appriciate your interest in helping me...it means so much to me to be taken seriously and to have your insight on possibilities and questions to ask doctors. :)
    Rose1001 4 Replies
    • February 20, 2008
    • 05:08 AM
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  • The sporadic and pressure stuff sounds like it’s apart of your depression. This could be a side-effect of Zoloft. How long have you been on it and has your dose ever been reduced or increased? Do you feel that you still need it? What I am eluding to is that majority (if not all) of your symptoms could be due to an overdose of Zoloft (yes all – confusion, polyuria, etc). …Here is a challenge: since you’re so much of a health nut ask the doctor to titrate your current dose. Definitely have a plan ready for coping with possible greater depression, ie, have a friend/ family member you trust watch your mood swings for differences.
    Undeleted1 28 Replies
    • February 20, 2008
    • 05:09 AM
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  • You sound a lot like me when I first got sick...First of all, while we can't rule out depression, anxiety, stress, "female" problems, etc over the computer, my gut instinct, when you describe the doctors who call these symptoms hormonal housewife female-type things is this:RUN, RRRUUUNNN as fast as you can out of their office. !!!! Flee the chauvenistic comments before they start to sink in and make you sicker.Run, Rose, Run!Okay. Sorry. It's just that they did that to me, too. And I fell for it, and my self-esteem slowly eroded from all the self-doubt (was I really making up my own symptoms, or somehow causing them myself???)Eight years, and eight neurologists later, I was finally diagnosed with a rare complication of autoimmune thyroiditis called Hashimoto's Encephalopathy.Whoops!My thyroid hormones had been normal the whole time, so I was reassured, over and over that my gland was healthy as a ***m.It wasn't until I found a neurologist who had heard of HE, noticed that I had a lot of thyroid symptoms, and decided to check my thyroid ANTIBODIES that I got diagnosed. The antibodies were both (thyroperoxidase and thyroglobulin) elevated. And then I had an ultrasound of my gland and it was full of tiny nodules from the autoimmune destruction.So, I don't want this to happen to anyone else. I have no idea if you have what I have, but I just don't want to see any one else go through what I just did. You could very well be in the early stages of something autoimmune, neurological, chronic-fatiguey etc. At the very least, I wonder if the right head pain and sensitivity to light might be migraines (my migraines turned out to be from the HE, but they are common by themselves too, especially in women).Please do not listen to people who tell you that your symptoms are from hormones or depression. Trust your gut that something is indeed wrong- I wish I had, and not let the doctors make me sicker.Best Wishes.
    Anonymous 42789 Replies
    • February 20, 2008
    • 09:12 AM
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  • In response to undeleted1- i've been on zoloft and a steady dosage for a while, it is actually a lower dosage than was prescribed, I was told to do 100 mg after doing 50 for a week...I started feeling (moodswing wise) better right away so I never upped to 100..i KNOW i am not depressed...a part of me maybe is in denial, But, after talking to a different doctor she said that I probably wasn't depressed if I truly felt that I wasn't lol. I did have mood swings terribly though so the zoloft has been great with that. None of my symptoms got worse or lessoned while taking zoloft so they ruled out zoloft being the cause of all of my symptoms. In response to Elke, Thank you. Thank you for telling me that I'm not the only one that can start to doubt myself when others are so adimant in putting me down. Thankfully I do have a great supporter (my husband) who gives doctors a dirty look when they mention depression. He knows me better than I know myself sometimes and so he is fully aware that SOMETHING is going on. My thought is this...if I am so insistent that SOMETHING is not right with my body, if I am mentally making it all up without realizing it, then I am still "sick" right? lol. I mean in some form or another, mentally or physically- i would be considered sick. I am going to go the the lupus doctor soon...maybe he will be more willing to listen to me, I'm thinking i'm going to ask for a white blood cell and platelet count so that we can at the very least rule out major problems, at least maybe then we can narrow what might be happening to me. Thank you for all your support and advice...so much. It truly means a lot
    Rose1001 4 Replies
    • February 20, 2008
    • 04:25 PM
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  • I am so sorry you are going thru this ordeal. When it comes to thyroid issues (endocrine system) - you need to do the tests on a fast (no food/no drink) - try to do that in the morning and then bring something with you. The tests should beT3 & T4, TSH Panel Medications vary person to person - so while Zoloft might work for you - I can't take it. Any time a dr, nurse, lab person - tells you "probably normal" - run as far away from that place as you can. It's either normal, or not. Get copies of all your lab results from your dr or lab so that you can monitor your results. Sometimes I think doctors can rush reading the results (example: TSH (on a fast) is 9.587 (parameters are 0.350-5.500 - the that is high. Then you take another TSH (on a fast) and it's 4.200 - now you have a history of what your levels are regardless of the test you take). Make sure all your doctors all have the same lab results by personally getting them to them and then calling to make sure the fax or email or whatever has been put in your files. I say this because - I have been thru heck and back after my thyroidectomy. I was absolutely perfect after the surgery. All I was told was to "watch my calicum, and if my face around my lips are numb get to the doctor immediately and have your levels checked." I did exactly that - one thing they did not tell me was that no one switched my thyroid medication to a lower dose - hence too much medication, no thyroid and wham - stroke type symptoms. I monitor my lab results with a fine tooth comb. I have books, read what I can and I have a spreadsheet on my test results. I have given all my information to all my doctors, in hopes that just in case one misses something, maybe the other dr might find it. I hope this helps some - and I will pray for you to get to the right dr for the right help. My system was hyperthyroid as a young adult and at 33 years old, went hypo. After 15 years, and many battles, we finally removed the darn thing. If someone had just lowered the medication I would not having issues like I am dealing with now. Get your results, grip - yell or scream if you have too - you don't feel well, you are young and don't let any medical professional pass this off as "getting older" or "probably". MiMiKay
    mimikay77 5 Replies
    • February 21, 2008
    • 00:33 AM
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  • Thank you so much, They have done fasting levels twice. It was done 15 days apart with the results being in normal range, They did fluctuate 15% for both Free T4 and TSH. I have an appointment with the endocrinologist at the end of next month, This comming tuesday (26th feb) I have an appointment with an internist/lupus/rhuematoid doctor to have me checked for that. Lupus is very prevailent among my family. I think I want to ask for a whiteblood cell count and platelet count just to rule out more serious things... I suppose I just don't want to feel stupid fo rasking for it, I am just tired of speculating FOR the doctors since nobody wants to speculate for me lol. My calcium levels, and other levels regarding kidney's and livers have been "normal" and I am going to get a copy of all my records so that I can take them to the new doctor's. I have had a new symptom start to show up- nausea...usually all throughout the day but not too bothersome. The zoloft has actually been really wonderful. I had these symptoms prior to zoloft and none of the symptoms seemed to get worse when I started taking them, they have slowly gotten worse over time. I have quit going to the ER because they all can't seem to give me any answers even though some of my symptoms are signs that something is possibly going seriously wrong. Last night was a bad episode with the "airplane cabin pressure" feeling in my head, i felt really lethargic and weak and was overcome by unexplained fatigue uncured by caffien or any other energy supplements, My whole body looked white as a ghost and my poor husband was probably the most fearful between us because even my finger nails showed NO colour. He said my hands looked dead...and they felt like that. None of my symptoms get better with food or sleep...
    Rose1001 4 Replies
    • February 21, 2008
    • 02:45 PM
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