Discussions By Condition: I cannot get a diagnosis.

Can't live like this anymore, Please help

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: Anonymous
  • August 6, 2008
  • 01:39 AM

I am a 30 year old female ,who just over 1 year ago, suffered from serious complications during my pregnancy. After going to the ER twice with severe GASTRIC pain (not contractions) at 34 weeks, I was sent home with sleeping pills and told to take some pain killers. Three days later on was rushed to the same hospital, told I was in critical condition, and that I suffered from HELLP syndrome (very severe form of pre-eclampsia). My platelet counts were so low the C-Section itself was a huge risk (uncontroled bleeding). Following the birth, my platelet counts continued to drop, and my poor husband was told to plan for the worst, call family, and to start getting final arrangements in order. Every OB on staff over the next 5 days in which I was confined to bed stopped by to see the patient who beat the odds and lived.

My primary OB confirmed that a simple blood test should have been done during one of my previous ER visits, but the resident (don't get me started-- this is the 2nd time one almost cost me my life) did not pull the blood and missed a near deadly condition. The symptoms were also not clearly communicated to the on-call doctor.

After such trauma, I have suffered greatly for the past year, contrary to my MD's belief. Prior to the onset of the HELLP syndrome, I was active, alert, and "normal". I played ice hockey, stayed in kickboxing, and did a lot of areobic exercise until I got 'too big' or was risking the baby's safety. From there, I continued to walk 3 + miles a day until the last week of the pregnancy when I fell ill. Following the birth, I suffered from PPD with moderate to sever symptoms and began treatment with SSRIs.

For the last year, I have been suffering from extreme fatigue to the point it is debilitating. I've had sleep studies and a TSH test for thyroid. Of course, the TSH levels were normal and the only thing the sleep study confirmed was that I was a "very, excessively tired" individual. The Dr.s are only concerned with treating the symptoms, so I am pumped full of Provigil and Metadate in hopes of staying alert enough to function. I have rarely, if ever, driven in at least 8 months because I can hardly stay awake. My appetite is minimal and based on my food journal, I eat between 900 to 1300 calories a day. Hoping to regain control of my life, I also began a 'bootcamp' program with a personal trainer. Needless to say, in over three months, I have not dropped 1 pound of weight. In addition, I suffer from edema in my ankels and feet by the end of each day. I actually had bruises from my shoes that started out loose in the morning and got too tight by the afternoon. While brushed off by my PCP, the sleep Dr. was concerned that I had over 1/4" of fluid on my ankles the last visit I had with him.

I am at wits end. Just today I begged to be referred to an endochrinologist for hormone testing beyond the thyroid (perhaps cortisol levels), but I was refused by my PCP. I feel as though he sees me as an obese, hypochondriac, eating 3000 calories in junk a day, getting 4 hours of sleep and then asking him for a pill to fix things. On the contrary, I am a scientist-- schooled in Animal/ Human Biology working in the Pharmaceutical industry who is desperate to get OFF the pills attempting to mask my symptoms. All of my attempts and pleas for help with diagnosing the root cause of my 'issues' have gone unheard. So, here I am. If anyone has any advice, please, please, please respond. I can't go on like this anymore and the only MD that can 'see' what I am going through is not authorized to refer me to another specialist.

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