Discussions By Condition: I cannot get a diagnosis.

Doctors STILL don't know what's wrong!

Posted In: I cannot get a diagnosis. 53 Replies
  • Posted By: emilymay8603
  • July 25, 2007
  • 11:45 PM

Hi, I was on here a few months ago and I have yet to be diagnosed. I have put here some old and new information. If anyone can help me, I would owe my life to you.

I also printed this page out and gave it to my Primary Doctor.

March 8th 2007- I went to my primary doctor, I was having lower abdominal pain, and pain when I went to the bathroom. He prescribed me antibiotics and said I probably have a UTI.

March 9th 2007- Got a pap smear from the OBGYN

March 10th 2007- Sudden onset of severe nausea, and lower abdominal pain. Started daily fever of around 100.0. Started month long headache on right side of head, that would go away when taking Tylenol but would return when Tylenol wore off. Did not mention to primary dr, thinking I probably had sinuses.

March 12th 2007- I went to the emergency room. (Desert Valley Hospital) E.R said I have Pelvic Inflammatory disease. I was prescribed antibiotics.

I took all antibiotics as prescribed. But continued to have the same symptoms.

Around March 29th 2007- I had been having bad abdominal pain and I was still nauseous , went back to my primary doctor and told him I am still feeling horrible. He said I probably have Bacterial Vaginitis. He prescribed me antibiotics.

April 3rd 2007- I went to a different emergency room. St. Mary's) they did a Pelvic cat scan, pelvic exam, and blood tests. They said they cannot find anything but a small cyst on my left ovary, that shouldn't be causing any symptoms. I mentioned my daily headaches to emergency room, they did not seem concerned.

April 9th 2007- I have had a mild fever, bad headaches 24 hours a day, nausea 24 hours a day and bad stabbing pains that come and go for over a month. I have barley been able to leave the house for all this time. I cannot go shopping, because when I stand for too long I get really light headed, and I feel like I am about to throw up.
Mid April- noticed upper abdomen was very tender, directly under my ribcage, in the center. This tenderness is usually only felt when lightly pressing in the spot. When nauseous, pain can be felt without touching that spot. The more nauseous I am, the worse it hurts.

IUD taken out.
I still feel very nauseous 24 hours a day. I haven't been able to really go anywhere since the beginning of March. I can barely clean the house. If I stand up for more than about 10 minutes I start feeling really dizzy and even more nauseous . I feel like I am car sick all the time, and when I am in a car I feel worse. I can't watch certain things on t.v, any type of fast motion makes me sick, for example watching cars race around a track, or watching someone playing a video game.

*Lower abdominal pain stopped a few days after IUD was taken out.

June 4th 2007- Went to Emergency room. (Desert Valley Hospital) Had abdominal and pelvic CT scan. Both came back normal expect for the pelvic cyst. E.R. Doctor said that I have G.E.R.D, and that, was causing my nausea, upper abdominal pain and pain in my ear. He said when I lay down the stomach acid goes into my ear. (I do not ever have heartburn)

June 14th 2007- Had upper and lower GI series done. Results were normal.

June 18th 2007- Went to Primary Dr. I told him I had been experiencing hearing loss, and ringing in right ear. I also told him I have a lump on my neck right under my right ear. He said it was probably just a swollen lymph node, due to an ear infection. I was prescribed antibiotics.

June 27th 2007- Went to G.I. Dr (Weight was 103lbs) Told him I am on Meclizine for nausea, and it is helping a lot. He said that it is good that the medicine is working, and since it is working there is nothing more he can do for me. I told him about the constant pain in my abdomen, I asked him if it could be from a small hernia I have above my belly button, the hernia is immediately under where the pain is. He said I do not have a hernia and the lump I have is from my belly button being pierced. I told him that I just had my belly button in January of 2007 and I've had this lump since 2002. Then he said I probably have endometriosis, and that there is probably endometrial tissue there. When the G.I. Dr. was pushing around my "hernia" and the tender spot above it, the pain was so bad it made me cry.

July 2nd 2007- Went to primary Dr. (weight was 96lbs) Told him all glands in neck are still swollen including the one under my right ear, which had gotten bigger. Dr. ordered CAT scan of my neck.

July 11th 2007- Went to Primary Dr. (weight 97lbs)

July 17th 2007- Had IV contrast CT scan done of my neck. Results are normal.

July 24th 2007- Went to primary Dr. He said my CT scan of my neck was fine. I asked about the bump under my ear, and he said it is probably a swollen gland. He asked me if I or anyone in my house has been sick, and I said no. He is going to have me have an M.R.A.

July 24th 2007- Current symptoms:

Nausea when I do not take Meclizine

Nausea is worse immediately after eating

Headache almost daily on right side behind my eye and temple

Swollen lymph nodes throughout my neck

Swollen "lymph node" under my right ear is growing and when pressed on I can hear the sound of a heartbeat in my right ear.

("lymph node" whatever it is, is about the size of a dime, it is hard, does not move, and it isn't completly smooth, it feels like tiny crators sp. on it. It usually only hurts when pressed on firmly. However yesterday, I went to my friends house who I haven't seen in forever, and we talked and smoked cigarettes for hours. When I got home that lump hurt really bad for a couple hours. Not sure if it was from all the smoking or all the talking.)

Occasional hearing loss and ringing in right ear

Tenderness in mid upper abdomen (which is there 24/7)

Dizziness when standing for more than about 10-20 minutes

Weird things that I haven't mentioned to any doctors because I'm pretty sure they will think I'm crazy or a hypochondriac: By the way, I am fully aware of how crazy the following sound, just please keep in mind, that people know their bodies pretty well, and when something changes you notice it. The following may or may not actually be a symptom of anything beside insanity:

Increased sweating (I know it's very hot outside, but normally I am not a sweaty person, and this happens even when I'm in a cool room. I sweat from every part of my body, even my toes will have beads of sweat on them)

Night chills? (every night I wake up in the middle of the night freezing, I cover with another blanket, then I wake up soaking wet with sweat. This goes back and forth all night long)

All cuts, scrapes, and scratches become infected (pretty self explanatory)

Hands get wrinkled extremely fast when in water ( I know hands do this in water, however I've noticed lately that they wrinkle within 30 seconds to 1 minute of being in water. I've noticed them being wrinkled after using the phone, or even holding a cold drink for a short time.)

Thank you SO very much for taking the time to read this.

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53 Replies:

  • Have you been testing your blood sugar? Many of these symptoms my grandmother had. Found out she had type 2 diabetes. She ended up losing about 50 lbs before they figured out what was wrong.
    bonarro75 8 Replies Flag this Response
  • I think you should go to the county STD clinic and get tested for chlamydia (or insist that your doctor check you). With all these tests available, especially the one who "thought" you had an infection (didn't he check you?), I think if you do have chlamydia that you should sue them all.I would get a mammogram, too. Try that. Report back.
    Monsterlove 2921 Replies Flag this Response
  • I Don't Think It Is A Std! Considering That You Had A Pap And They Generally Test For All Of That Then. I Myself Have Been Having Simular Symptoms And My Dr Keeps Saying Gerd, Ibs, Ovaian Cysts, Scar Tissue From A C-section. Basically It Is Called Practing Medicine For A Reason, Half Of The Time They Are Just As Clueless As We Are! One Thing That My Dr Did Test For That Got Rid Of My Dizziness And Fatigue Was B12 I Had A Deffency And Now Take A Pill Everyday That Cut Out The Dizziness And Fatigue The Stomach Pain That Is A Different Story! Still Trying To Figure That One Out.Good Luck
    Anonymous 42789 Replies Flag this Response
  • gall bladder, pancreatitis,extrapelvic appendix, hyperthyroidism?
    rad-skw 1605 Replies Flag this Response
  • The type 2 diabetes I have thought of too. Does that show up in lab work, or it is a special blood test? The chlamydia, I was tested for twice, and was negative. The Vitamin B-12 sounds like a good idea to try. As for the gall bladder, pancreatitis,extrapelvic appendix, hyperthyroidism: Abdominal CT scan and blood work show nothing, Doctor said he check my thyriod, and it's fine.
    emilymay8603 37 Replies Flag this Response
  • Hi Monsterlove, why do you think I should get a mammogram?
    emilymay8603 37 Replies Flag this Response
  • To give everyone a little more information about me. I am a 22 year old female, 5'7, weight 97lbs. (No eating disorders.) I smoke cigarettes. I do not drink or do any illegal drugs. I have 3 kids, and I've been married for almost 7 years.
    emilymay8603 37 Replies Flag this Response
  • Diabetes does not show up in a blood test persay unless your sugar happens to be too high or too low at that particular time. You would need to monitor it over a period of time. The monitors are quite inexpensive, like $18.00 at Walgreens for the store brand. And the test strips will run you about $30.00 for 50. This would be cheap compared to co-pays and medical tests.Check your sugar fasting, when you get up in the morning and then two hours after you eat. Keep a log to show your doctor. It might also help to write down what you eat to see if there's a connection between processed sugars and your blood sugar level. Your blood sugar level should remain between 70 and 130. Fasting should be between 70 and 105. Higher or lower than that, there may be a problem, either diabetes or hypoglocemia.Find more info and correct sugar levels online. Web MD is good.
    Anonymous 42789 Replies Flag this Response
  • Were any of those doctors a rheumatologist?
    Raven Storm 3 Replies Flag this Response
  • get a full blood test,sugar level, hormone test,If neck lymph nodes become more swollen and pain when press,get a biopsy of it then.
    Anonymous 42789 Replies Flag this Response
  • No I have not seen a rheumatologist. All I've seen is my primary DR. and a G.I DR. Than you xjia for the suggestions, I will ask my doctor to do those tests.
    emilymay8603 37 Replies Flag this Response
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  • Weird things that I haven't mentioned to any doctors because I'm pretty sure they will think I'm crazy or a hypochondriac You need to be upfront to your doctor regarding all your symptoms, how on earth do you expect to get a diagnosis otherwise. Things like increased sweating or night sweats may add doctors in diagnosing you.
    taniaaust1 2267 Replies Flag this Response
  • Hello taniaaust1, thank you for your reply. I did give all of this information to my doctor the last time I saw him. And yes I DO think, he thinks I'm crazy. :)
    emilymay8603 37 Replies Flag this Response
  • You may have gotten a very bad infection when you had your belly button pierced.. Maybe this is like a septic disease from that...I think the blood work would have indicated an infection, however...the pain in abdomen suggests std to me or belly button???? ..I don't like the swollen glands so I suggested the mammo, but your doctor needs to determine that. Can you check for lumps?
    Monsterlove 2921 Replies Flag this Response
  • Dear Emily, I have had your symptoms for years. Everything from the swollen lymph nodes, nausea, abdominal pain and was even misdiagnosed with Pelvic Inflammatory Disease and bacterial vaginosis. Soon, it will probably be that you are battling yeast infections as well.I highly recommend NAET or BIOSET therapy. I have attended 5 sessions and am off to a job interview this am after not being able to work for over 9 months.My doctor saw me last week and wanted to know what I have been doing. Apparently, he thought I looked great which is not suprising, as I "feel" great for the first time in years! I told hiim I had attended Bioset. He had never heard of it, but was very interested. On Wed, I went to my Bioset doc and he said that my doctor had called and was interested in some information. My doctor is going to attend Bioset for himself!!I have a diagnosis of CFS and the neurologist who diagnosed me told me that patients are getting relief of sx through naturopaths and holistic medicine. NAET/Bioset worked for me.I wish you the best...mommy cat:)
    mommy cat 1654 Replies Flag this Response
  • Monsterlove- That is interesting about the belly ring. I never really thought about it because the piercing itself never got infected. I do not think I will be able to get a mammogram because last year my doctor tried to get me one and they wouldn't do it saying I was too young. (lame I know)Mommycat- My doctor did mention cfs a few weeks ago. And the treatments you talk about I'm sure wouldn't be covered by my insurance. I live in southern California, my insurance is I.E.H.P. They really don't want to pay for anything. Do you think those treatments would be covered?UPDATE-I noticed yesterday that the gland under my left ear is now starting to swell, just how the right one started.I also devloved a cough, and a scratchy throat. Maybe it was from all the smoking the other day, not sure though.
    emilymay8603 37 Replies Flag this Response
  • Dear Emily, I am glad to know that you are getting somewhere with at least possibilities. CFS is very possible. I recognize symptoms almost instantly because I have lived with many/most for years.CFS is also referred to as many other illnesses worldwide. Myalgic Encephalomyelitis is another name as well as Post Viral Fatigue Syndrome and others. It can get confusing.The best advice I've been give so far is NAET/Bioset...Probably not covered by insurance. The amount of money you will spend in a year for "medical treatment" with traditional doctors has been and will continue to be costly, even with insurance. Bioset helped me so I pass it on...cuz it works.Research CFS/ME. There is alot of information out there.Detox with water and fresh lemon every dayuse sea saltdaily vitaminvitamin CZincHave B12 level checked and Folate level...supplement as needed.Eat organic/fresh/raw as ableI hope this information helps you. There are a lot of people in this forum with these symptoms. I have been around for a few months trying to help others but many don't believe it.I wish you the best Emily...and may God Bless you and your family...mommy cat:)
    mommy cat 1654 Replies Flag this Response
  • Have they done any tests for cancer or AIDS? These can cause swollen lymph nodes. You could also have some other type of infection. You mentioned taking antibiotics. Maybe they weren't strong enough or the right type.
    Anonymous 42789 Replies Flag this Response
  • Just started looking through this site today for the first time for an ear thing...Happened to come across this. I'm about the same age as you and I remember going through a lot of the same symptoms as you. It wasn't until after I got through the withdrawl of smoking that these symptoms lightened up. Have you tried quitting? I'm not going to preach at you or anything but you really should try. I was almost thinking a friend or family memeber could have written what you had posted about me... Also, I don't mean try to quit for a while, it took hard work and discomfort for a few months. I'm now about a year out and I rarely get any of those symptoms anymore. What the doctors told you...they told me a lot too...but it never solved anything!! So frustrating!
    Anonymous 42789 Replies Flag this Response
  • No I don't believe they have done an aids tests. I'm almost 100% sure I don't have that, just because I do not do anything that would put me at a high risk for it, but you never know. I have been thinking about that though. Searching all my symptoms online, that always come up. Having an infection that the antibotics didn't fix does fit, my husbad and I were just saying that yesterday. My nausea meds are no longer working, so I feel exactly how I did a few months ago.
    emilymay8603 37 Replies Flag this Response
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