Discussions By Condition: I cannot get a diagnosis.


Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By:
  • July 16, 2007
  • 03:21 AM

Well I've read some of your stories and I myself have a story to tell and hopefully someone can say I've had those exact things and help me help my doctor.

Approx last January, my husband was in the hospital due to an illness that our new doctor had diagnosed after the old doctor screwed up for many years not catching or treating the right diagnosis. I was at my husband's bedside constantly 24X7 while he was in the hospital. During his 2nd visit to the hospital I started having intense pain in my lower abdomen approx. 3-4 inches below my bellybutton at first I thought it was sympathy pains since it was the direct area that my husband was having his pain at and shook it off. I then started getting dizzy and spots in my eyes so I visited the doctor once hubby got out of the hospital. I was told I had dehydration and given fluids although I never really thought I "felt" better.

a while later I went to the doctor again cause I was having the most horrible time staying awake. I would fall asleep all during the day and with three kids it was really an inconvenient thing. So he felt because my tonsil's were way too large that it could be that I had sleep apnea and sent me to an ENT who ordered a sleep study to be done. During the sleep study I was found to have tachycardia and a 2.5 on the sleep apnea scale (you need a 5 to be diagnosed with mild sleep apnea) but it was found that because of the daytime study that I had narcolepsy was referred to a pulmonologist who put me on medicine which does for the most part help.

Then I had to go to a cardiologist because of my tachycardia during the sleep study plus the same results while wearing a 24 hour halter monitor however the cardiologist made the statement Women your age can't have heart problems to quit smoking or he'd see me in 10 years. So no answer for the tachycardia.

Then I had to have pulmonary function tests to find out the reason for my shortness of breath but for a smoker of 15 years I scored 100 on all the tests (how in the world I did is beyond me)so no answer for the onset of Shortness of breath

I started having heartburn/reflux for the first time in my life didn't know it until I went back to my ENT and could hardly talk due to being hoarse and he sent me to a gastro doctor who did an endoscopy to find some abrasions by my stomach from the reflux and put me on a drug for that.

Then I had to have MULTIPLE tests to try to find the cause of the horrific back/side/stomach pain I was experiencing and after colonscopies and barium xrays etc.. they just diagnosed me with IBS and pretty much deal with it

Finally I had to get a brain image for my pulmonologist who wanted to find out why I had constant severe at times headaches. The MRI showed white patches and severe sinus disease and a cyst in my maxillary sinus. When my regular doctor got these results he asked me if I had anyone in the family with MS saying it "could" be a previous attack but looked inactive. I just deal with the sinus infections cause I was not ready to have surgery to fix it.

So that brings us to now. I've for the past few months have had bi-lateral pitting edema in both of my lower legs irregardless to rest or elevation. My legs/arms fall asleep no matter how little inactivity is sometimes to the point that I have to really be careful or I can hurt myself walking. I get occasional fingertip tingling also in the shower this can occur. I get dizzy frequently which of course makes me nauseated. I have had instances where the numbness of my leg falling asleep has caused me to fall and I've had horrible coordination where I walk into walls (just jammed my toe the other day from walking into my kitchen wall) I don't think my perception of depth is very good at all. I have what my doctor thinks is a bone spur in my left heel and he noted what he "thinks" is a small goiter beginning in my neck (although I don't see anything unusual there) I have sometimes severe backpain and morning muscle stiffness and my doctor noted little cuts on the corner of my mouth that he said was caused by a vitamin deficiency and told me to start taking vitamins and cracking on my heel that he said comes from dehydration to start drinking more water.

He took the same blood work over again and did a more extensive results as well wanted me to go get some sort of cushion bloodtest done at the lab. Out of all of the doctor's I've been to, he's the only one that I really think believes me and what I tell him and not thinking I'm a hypochondriac or mental. He said he would be so proud when he finds the answer to my problem so I can get better. He told me I looked different in just a month that he knows something's up (I was like what do I look THAT bad) but knew he meant he could tell physically that something was not right with me medically. He constantly wants to check and test and test to try to find the problem. He even said he was going to do some research this weekend on rare endocrinology diseases because he said u have to consider everything and he's leaning towards an endocrinology or auto immune disease.

So if anyone has experienced this please do shed light on what you found out.


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