I apologize for the length of this post but over the past 4 months I have been through pure misery and no one can tell me what to do or even give me a possible diagnosis. I have spent over $20k and still I sit here miserable and undiagnosed - I am begging ang willing to hear any opinions or information you can give me:
in 2001 following being ill and undiagnosed I went to the Mayo Clinic in Jax, FL was found to have Graves disease and nodules on my Thyroid we dud Nuclear Medicine which "fried" my thyroid I now take Synthroid and like clockwork have all thyroid levels checked every 3 months. I also had a complete hysterectomy to include both ovaries, tubes, uterus & cervix due to severe endometriosis, ovarian cysts and cancer cells in my uterus and ovaries. I did Chemo for 12 months and have been clean ever since. I get checked out every year to make certain I remain cancer free. I do currently take EvaMist which is an Estradiol spray to treat the hot flashes as I am only 32 and they do get severe along with the night sweats. After the Nuclear medicine to get rid of my Thyroid I developed Migraines but was able to keep them under control with Topomax and Elavil as maintanence drugs and Imatrex as needed. I do have asthma and take Advair and Albuterol as needed too. All of these symptoms and problems above are under control. The issues are below:
In May of 2007 for no apparent reason I suddenly woke up one morning with the following symptoms:
nausea, diarrhea, fatigue the doctor gave me compazeine and Lomotil and in 2 weeks it just suddenly went away so we wrote it off as I had just picked up a bug from somewhere.
End of March 2008 same exact symptom came back again only to include lightheadedness this time. I went back to the doctor he advised I take the rest of the Lomotil and Compazeine to control the symptoms and added Pepcid and sent me for an ultrasound of my Gallbladder (which came back normal). Again this episode lasted about 2 or 3 weeks and just as suddenly went away again.
End of June I got sick with a severe sinus infection and went back to the doctor to get it treated. When I finished the treatment I felt great for about 2 or 3 weeks and then the symptoms from previously came back with a vengence and a few more were included:
nausea, vomiting, diarrhea, gas, fatigue, muscle weakness and stiffness, body pain, light headedness and dizzyness. I again went back to the doctor. He again sent me for an Ultra sound for my gall bladder and liver and both came up normal. He put me back on Compazeine, Lomotil, Reglan and gave me a referral for a Gastroenterologist. I went back to my doctor because I was so miserable. He put me on Xanax and gav me a script for valium told me he wanted me to take some time off of work until he could figure out my problem. I filled the valium and took it once and never took it again as it knocked me out cold. The xanax I was taking at bedtime to help sleep because even though I am so tired I was having trouble sleeping. Things continued to get worse as I had found I lost 20 pounds in 4 weeks and was still nauseas and had all the symptoms every day so I went to the ER doctor changed me to Zofran since the Compazeine hadn't been working and also sent me for a stool sample. He gave me 3 bags of IV and advised I come back in 2 days if I still couldn't keep food or liquids down or got worse. I went to the GI he did a colonoscopy and endoscopy said everything was normal and I was a new patient and thus he didn't really have the time to figure out my problem so I should think about finding another GI. Therefore since I was still so ill I went to the Cleveland Clinic, FL and saw the Gastro dr who diagnosed me with functional gastro disorder. He took me off the elavil and put me on nortripltiline. After a 4 week period of waiting to see if this medicine change would work and also getting the results of the gastric emptying (which came back normal) I actually had a 2 week period where I felt great. I was finally back to normal. That Normal only lasted 2 weeks. Then everything was back to ***l again and this time I had another symptom of head aches and migraines. (However, I think this may have something to do with the weather changes right now too - so I'm not really sure about this being an associated symptom). So this dr said he misdiagnosed me he doesn't feel I have functional GI disorder and I went back to my dr who told me to see a neuro. I went to one from the Cleveland Clinic (just pulled one from the book) and he said he has no idea what is wrong with me either but he put me on topomax 100mg a day- I was displeased as he said "since I work in the accounting field my problem is purely psychiatric because of the economy". So, I am begging - can someone please give me a direction to go? I have gotten to the point where I have figured this is just the way I have to spend the rest of my life and this is no life at all. I did just find something on Addison's disease which lists a lot of my symptoms. Also the physican asst at the neuro on 11/26 during her exam took my BP laying down it was 110/80 sitting up she said it was very had to hear and it took her 4 times but when she finally got it she said it was 96/70 and standing up she said was even harder to hear but finally she got it at 80/50. my pulse was rather fast at around 110 she said that was because I was nauseas and in pain.....
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