Discussions By Condition: I cannot get a diagnosis.

I am sick of being sick.

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: AmberLynnRN
  • June 7, 2007
  • 02:28 AM

Alright- here we go! Sorry for being so long but I need help. :)
I am currently 26 and work as a chemotherapy nurse for about a year.

I don’t know a lot of my family history as I am adopted but do know my bio mom had thyroid cancer and bio sister had cervical and uterine cancer. There is a possibility that my bio mom drank and did drugs while she was pregnant with me:mad:

I was a very healthy child even though I had rubella when I was 4 (I had my immunizations but it did not work in this case). We lived in Indiana and I had no allergy problems. We moved to Florida when I was 12 and I had some seasonal allergies. When I was in eighth grade I started having bad reactions to insect bites/ stings. In 9th grade I had my first anaphylactic reaction to a fire ant- from then on I was in the hospital 17 times my freshman year due to anaphylactic shock. I was miserable! A wonderful ER doctor suggested my parents look in to allergy shots. I was skin tested and found to be allergic to yellow jackets, wasps, bees and very, very, very allergic to fire ants. I received allergy shots for 7 years.

About 4-5 years ago, I started to feel very tired all the time. I would sleep all night and not feel like I slept at all. I attributed it to finishing nursing school and starting my first real full time job. About 2-3 years ago I started feeling worse and getting recurrent infections. I also developed a severe allergy to cats- now I am not allergic to the insects but can’t go into the same house as a cat without wheezing. If I touch the cat I have an anaphylactic reaction. I also started having recurrent infections- anything from recurrent bronchitis, sinus infections, skin infections, etc.

In November 2005 I had my tonsils taken out with hopes that my recurrent infections would stop because the tonsils would not be harboring bacteria. I had had strep throat 6 times in 4 months. I had about a 6 month reprieve.

In July 2006 I started to feel tired again and went to the doctor. He said it was allergies and put me on meds. I tried about 10 different allergy meds and nothing worked. My primary doctor SUCKS and then he attributed my fatigue to depression so he put me on antidepressants. I had bad reactions to each antidepressant and he finally took me off. He never talked about the recurrent infections.

In October 2006 I ended up in the hospital with an arrhythmia that was attributed, after a Holter monitor and stress test, it was related to my weight. There was some worry that the recurrent strep infections could have damaged my heart by that was ruled out. I have been losing weight and exercising. The arrhythmia has pretty much stopped.

In January 2007 I was hospitalized with severe diarrhea and vomiting and was diagnosed with infectious colitis. February brought about a colonoscopy and EGD and it showed I had slight IBS and diverticulitis.

I have missed a lot of work since starting my current job in June 2006- it is my dream job- I am meant to be here and I can’t lose my job. I was almost not given a full time position because of my absenteeism. :eek:

I have a strange darkened area on my right lower abdomen that has thicker skin than everywhere else. Biopsy should hyperpigmentation and hyperplastic skin (dark and thick skin)- but I already knew that. It showed nothing else.

Since March I have had an infection of one type or another. I have been on antibiotics 3 out of the last 4 weeks. I finish the antibiotics and am off for 5 or so days and the infection comes back. I am running low grade fevers, mostly at night. I will wake up and be shivering cold, cover up and go back to sleep, and wake up later and the bed is soaked.

ME/CFS has been ruled out, Epstein Barr Virus negative, Monospot negative, Strep negative, regular blood tests are fine, thyroid is within normal limits.

My primary doctor finally said that I probably have an immune deficiency.

I went to see an immunologist on Tuesday and go for blood work on Friday along with some CT scans. The blood work includes testing for lupus, IgG, IgM, and other immune components, diphtheria, and tetanus. I am scared to death to have lupus or scleroderma but it is a possibility. He is comparing the possibility of immune deficiency vs. autoimmune disease.

I have seen my primary, a cardiologist, dermatologist, ENT, immunologist, GI, and a psychiatrist (the psychiatrist even said that she didn’t think it was all in my head like my primary thought).

Any thoughts? I am sick of being sick. I don’t feel good. My husband is amazing and so supportive but I want to be a wife and I don’t feel good enough to.

Any suggestions would be greatly appreciated.

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5 Replies:

  • I too have had alot of the same thigs going on. It has been a 3 year ordeal for me.Except I run a fever most of the time. 101-102. Which after time I get really tired. I asked to be put on ani depressants,cause being sick all the time was wearing me down physically and mentally as well.The only thing that "proves" I am nopt a hypocondriac (sp?) is the fever.I have had all sorts of blood work. Nothing! I Have had round after round of antibiotics. Nothing! Well I feel better after a few days on them, then bad after about 3 days off of them.This is totally driving me nuts as well.I go on the 11th to get a ct scan of my sinitius. Doc thinks perhaps I have a abcess or something going on. Stay in touch perhaps between the 2 of us we can figure something out and other venues to look at?
    Anonymous 42789 Replies Flag this Response
  • Many of us realized a while back that our symptoms were strangely similar. Since then, One had already been diagnosed, two of us have been recently and two more are awaiting their "official diagnosis"Has either of your doctor's considered Chronic Fatigue Syndrome?That is the diagnosis I'm referring to
    Anonymous 42789 Replies Flag this Response
  • CFS has been ruled out.
    AmberLynnRN 6 Replies Flag this Response
  • Hi AmbeLyn, A few things strike me about your post. Your primary Dr. does suck by the way. Many of the b;ood tests you listed that you are now having should have been done much earlier. You had Mono, EBV tested but should have had IgG and IgM run with them. Scleroderma can cause thickening of the skin. Why would you not be tested for lupus/scleroderma when this thing was biopsied? I don't get any of your Dr.'s thinking. I am curious how the diseases you list were ruled out and by whom. Was it your primary Dr.? It is my understanding that ,other things must be ruled out before CFS/ME is ruled out, particularly since you mention no MRI's of the brain or anywhere else. You mention you have had numerous infections but your "regular blood work" has been find? How did the Dr. that prescribed the antibiotics know which one to use? What kind of infections did you have? Also, your timeline.....did the fatigue start after your 7 years worth of allergy shots stopped? Any vaccines? Your primary went from depression to immune deficiency and hasn't adequately tested any physical causes for fatigue that can be traced from bloodwork, such as b12 or ferritin? Look at the RDW in your CBC results. Sometimes Dr.'s ignore these. Red Cell Distribution Width or diameter. All of your RBC's should be the same size: Not too small, too large or different sizes. Something is definitely missing in your care. A few things in your post do not make sense, that's for sure. Also, I do not understand how your arrhythmia can be caused by being overweight. I do not buy that at all. Does your Dr. have a BS degree? You know...the kind that stinks. More likely your arrhythmia was caused by an electrolyte imbalance if it occured only once...healthy people get arrhythmia's. But....you also do not say which kind of arrhythmia you had. That would give more info. But....why would you have an electrolyte imbalance if all of your tests results are "fine"..... Obviously, you need to await the results of your outstanding bloodwork and cat-scan. I would try a new avenue, either with a new Dr. or a new specialist you have not seen. Your primary got it wrong once....so that would give me a bad vibe. You describe a similar pattern of fatigue that I have had. A little, a lot and then worse, with infections developing. I am on a similar path of discovery as you. I wish you well and please post perhaps a list of all your symptoms and your labs when you get the results to this thread, I will check back.:)
    Anonymous 42789 Replies Flag this Response
  • How is it that CFS was ruled out? You need a new doctor, as the person above mentioned. She is correct. Many things not adding up.You are an RN? Have you had the Hep B series of vaccines?
    Anonymous 42789 Replies Flag this Response
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