Discussions By Condition: I cannot get a diagnosis.

Frustrated and no diagnosis

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: MrsKipilo
  • February 27, 2007
  • 03:09 PM

Hi. I am a 37 year old female who has been frustrated with my doctors for several years. No one knows what is going on. It may be a little long, but hopefully, someone can tell me something.

In the spring of 1999 I had a horribly infected wisdom tooth. The pain was so bad it radiated down my right arm. It felt like my arm was broken. I finally was able to have the tooth removed several weeks after.

About a month after my teeth were removed, I was outside in the sun waiting for a bus. After about 15 minutes, I had target-like rashes on my arms and my skin felt like it was burning. My whole body felt as if I were just beaten with clubs.

I went to the doctor shortly after that and was told it was hives. I was put on 190 mg/daily of Prednisone and went from a size 8 to a size 16 in 9 months. I quit taking the Prednisone all at once without tapering off because I ended up losing my health insurance when I was laid off.

From the Summer of 1999 to the present I have been in and out of emergency rooms, doctor's offices, specialists offices, etc. with no diagnosis. I have been told it is all in my head. I have been told that it is due to my weight. I have been told that I need gastric bypass surgery. :mad:

My weight stayed under 200 pounds until last summer. I could barely eat and my stomach kept bloating. I ate less than 1500 calories a day, but when I went to the doctors, I found out that I had gained ANOTHER 100 POUNDS!!!!!!!!! Again, I was told that I needed to lose weight. The problem was all in my head, etc. I went to one GI doctor who just patted me on the stomach and said "You know your problem is from eating too much, don't you?":mad:

I had been getting pains in the chest and left leg from the left side of my lower back to my thigh. The right leg and lower back has no pain. THANK GOD!!!!!!:D I would go to the ER, they would do tests and find nothing.

I went to my 10 rheumatologist who decided to take 17 tubes of blood from my body at one time. Some tests were a little high, some a little low, but "Nothing to worry about". SHe had an ACE test performed on me, which was highly abnormal, but the accompanying chest x-ray was normal. She stated that she had never seen that before and ordered both tests again. The results were the same. She then said, "I don't know what is wrong with you. I have never seen this before. I can't help you."

My stomach had kept growing again and I now looked 9 months pregnant. Went to the 2nd GI doctor who started manipulating my abdomen and stated that he felt something near my spleen. He ordered me to have an ultrasound done that day. The ultrasound showed an enlarged spleen. The doctor ordered a CT scan on the left side of my abdomen. A few days later, they found nothing again. The doctor had to order the test again because they had mistakenly done the CT of my RIGHT side. So after waiting another few days for the tests to come back, I was told that my spleen was enlarged, but that it was "Normal for my size". Again, there was nothing that could be done except to "quit eating so much and exercise daily."

Then I went to my GYN who ordered an ultrasound of my ovaries and blood tests. He thinks I may have Polycystic Ovarian Syndrome, but he put me on Metformin and that was it. My stomach is still bloated, I am still in a ton of pain, and every doctor tells me I need gastric bypass surgery, even though I eat less that 1500 calories a day.

Can anyone out there help me??? Oh, by the way, I have all the symptoms of Lupus, but the doctors tell me that I don't have it because my ANA test is negative. But my test for inflammation is 5 times what it should be. They told me that the C-Reactive Protien test was elevated because I NEED TO LOSE WEIGHT.

They say that is where my pain comes in, even though I have a friend that is well over 400 pounds and she can run, jump, bicycle, dance, walk, etc. without being in any pain. But if I try to stand in one spot to do dishes for more than five minutes, it feels like someone is stabbing me in the left side of my lower back, around my kidneys and my thigh. Mind you, there is no pain in the right side anywhere.

Oh, I was also told that I was depressed and had fibromyalgia. I also don't get my period every month and when I do get it, I am so sick for the first 2 days, I can't even walk. I lose large clots that the docs say are all in my head.

If anyone can help me by suggesting what other doctor to go to, I would greatly appreciate it. My husband and I are willing to have me under a doctor supervised diet, but the doctors tell me that it is not necessary. I should just have the bypass done because it is much quicker and easier.

I have also been to 2 endocrinologists who have told me that my blood sugar is perfectly normal and that my blood tests are not consistent with PCOS, but my GYN thinks that is what I have due to the cysts on my left ovary where I am having all the pain. I also heard that if the fibroid or cyst were to press on a nerve, you could get lower back pain, thigh pain, etc. but the doctor said that it wasn't possible in my case.

Please help!!! I am desperate. I just want to be able to stand and wash the dishes in my house again or walk more than a block without being in such agony that I literally cry.

I had just gotten married less than two weeks ago and when I was standing in church to say my vows, the pain in my left thigh and lower back was so bad that I was crying from the pain.

Reply Flag this Discussion

7 Replies:

  • God is punishing you. You are doomed!
    Anonymous 42,789 Replies
    • February 28, 2007
    • 06:47 AM
    • 0
    Flag this Response
  • go to gynecologist, tell them you're having VERY painful periods (cant walk, etc) and are having "irregular bleeding". This should lead to vag ultrasound. if nothing found here continue to complain until they agree to do a laparoscopy - the problem will be found at this stage. You likely have endometriosis and your weight gain is due to imbalanced hormones. once you get the endo diagnosis make sure you have *excision* surgery if pain continues and see a top doc for this becoz mediocre ones will not solve the problem for any longer than a year. Do NOT allow anyone to perform a hysterectomy becoz this will open up a whole new can of worms. In the meantime, religiously try following the suggestions at endo101.com to see if this helps alleviate the pain - it could very well. In that case - no lap surgery necessary.
    Anonymous 42,789 Replies
    • February 28, 2007
    • 07:49 AM
    • 0
    Flag this Response
  • Hello, "Target rashes" are "bullseye rashes" and the first signs of a tick bite/ infections!!! All of your health problems are most likely a bacterial tick infection. LYME DISEASE and CO-INFECTIONS. I was put through the gamit with the "all in the head stuff" too, your story sounds like me for 15 yrs!!! Get a Western Blot test, its the most accurate test. Most dr's never test for Lyme. The prednasone probably made you worse as its an immunesuppressant.. Go to this site, lots of info and help there www.lymenet.org Best wishes.
    Anonymous 42,789 Replies
    • February 28, 2007
    • 07:25 PM
    • 0
    Flag this Response
  • sounds like aids.
    Anonymous 42,789 Replies Flag this Response
  • sounds like aids.No .. its Herpes you *****d
    Anonymous 42,789 Replies Flag this Response
  • After you had the bad tooth removed, did the doctor give you antibiotics? If not, he should have.If he did, the rash/blotches could be from that; many antibiotics increase skin sensitivity to sunlight such that you could burn severely in only 10 - 15 minutes.190mg of prednisone daily?!?!? That's RIDICULOUS!!!!Stopping it abruptly was a BIG mistake, and many of your subsequent symptoms may well be from that.NO GASTRIC BYPASS!!! That isn't your problem.I suggest that you find a good, NEW doctor (general practitioner) who hasn't seen you before and start clean. Tell him/her the story about the infected tooth and the pain shooting down your arm, the extraction, the antibiotics if applicable, the following sun-poisoning episode (that's what it sounds like it was; Lyme would not have produced bullseye rashes all over your body at once like that), the prednisone (dosage and duration), and that you had to stop it abruptly. Then wait to see what he/she thinks.Answer any questions exactly as asked; if he/she asks about tests and you've had them done, only then give a copy of the results (don't just say what they were; let the doctor read the full results). Don't elaborate unless it's relevant or you'll confuse the issue.See if that gives you any better answers. Your current doctors have already made up their minds to not believe you, so scrap them all.Best of luck to you.
    Anonymous 42,789 Replies Flag this Response
  • It is your weight unfortunately. The things you put in your post are indicative of many similar things that two of my friends went through and they are both significantly overweight.Consider dieting and stay the course. Your stomach is very large right now and needs some time for it to shrink on its own. You will feel hungry - sure. But fill yourself up with all the good stuff. You can eat as many vegs and fruit as you want - the sky is the limit. So why not give it a shot? It won't kill you, but being obese will.
    Anonymous 42,789 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.

Signs of a Psoriasis Flare

Know the five types of psoriasis and how to spot flares.

How Diabetes Medications Affect Your Appetite

Newer diabetes treatments can suppress appetite and aid weight loss.

What to Do For Dry Mouth

Try these tips to get your salivary glands back into action.

The Painkiller – Constipation Connection

Constipation is a common side effect of opioid and narcotic pain medicines.

9 Signs of Sensitive Skin

Is it sensitive skin or something else?