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Shayla's Story...

I guess I'll start back when I was 19...don't worry, I'll try to make a long story short LOL As a teen, I had anxiety and depression. A great psychiatrist thought it might be a medical problem and ordered an MRI and an EEG. Both were abnormal. MRI showed enlarged pituitary and EEG showed seizure activity in the temporal lobe. They wanted to repeat the MRI with contrast to see if there was a pit tumor. But, I freaked out and had a panic attack. The tech told my doc that it was no big deal, that it was probably just from my age and particular timing during my "cycles". Sooo, I didn't have the MRI repeated until I was about 25. (At which time they said it was normal)

At 26, I got a pacemaker for neurocardiogenic syndrome. At 28, I suddenly got type1 diabetes. The doc said it is autoimmune because it came on so suddenly. (They were able to prove this because my 1st HBa1c was normal...which is evidentally extremely rare...they made the lab run it twice, then my cardiologist still thought it was a mistake so he made his lab run it twice LOL) At 29, I had a hysterectomy for ovarian cysts. I felt horrible after surgery. I developed some sort of infection and the glands in my groin area swelled up.

Skip to a few years ago (I am now 36). It was summer and I stupidly stayed out in the sun too long. Got a nasty sunburn, but no blisters or anything that horrible...but for some reason, it triggered my first pain flare. A BAD one! I seriously thought I was going to die!!! I had pain no matter what I did. I broke out in hives once during this time, developed foot drop, had abnormal reflexes, was diagnosed with trigeminal neuralgia, but most of all, the pain was sooooooo bad!

The first doc dxed me with fibromyalgia, but my family doc thought that was wrong, so he sent me to a couple of docs. A rheumi first, who said it wasn't lupus, and sent me to a neuro...who said it was MS, ran an LP, then said it wasn't MS and wouldn't see me again!!!??? Okkkkk, whatever.

After 3 months of that horrible pain, it went away for a few months. Then it came back. This time, the glands in my neck swelled up huge with it! I saw a different doc because mine was out of town. She said the only time she has seen glands that swollen has been in patients with vector disease or lymphoma. So, they ran a bunch of tests. My testing for Rocky Mountain Spotted Fever came back low positive. She sent me to an infectious disease doc...that pretty much laughed it off. He said it was too low to be considered positive (confuses me since it was low POSITIVE, not high negative! LOL)

After having the one neuro say he wouldn't see me again, the infectious disease doc act like I was a nut case, and another neuro that said there was nothing wrong with me and I should stop making these complaints (ummm, what??? Okkkk, whatever), I just gave up.

I would like to add, some of my muscular symptoms could, and occasionally still can be seen by others! You can actually see the twitching in my calves. I sometimes get a buzzing feeling in an arm or leg and when it's really bad, others can feel what they have described as an electrical feeling. My family doc called it muscle fibrillation. I also have headaches, occasional stabbing pains behind my eyes that stop me in my tracks, and charlie horses. I'm tired a lot. I was given provigil for that, but it didn't do any good. My memory isn't very good either. Even my husband is a bit concerned about that.

I have high cholesterol, osteoporosis, and high liver enzymes. My vision has gotten worse the last couple of years. In order to see the guide on the television or street signs when I drive, I now have to wear glasses. My balance isn't what it used to be either, but I have always been clumsy. I'm a wall hugger now though. I often bump into door facings when I walk through them, or bump into people if I try to walk beside them. I guess I have lots of weird symptoms.

What I DON'T have is a decent doctor!!! And I have to admit, I have a fear of going to new ones now...I hate for them to act like it's all in my head! I have a diagnosis of bipolar disorder too. Got that a few years back. I'm not 100% convinced that I have it though. The symptoms that earned me that dx were: bouts of hyperactivity followed by bouts of no energy. The docs say the bouts of no energy and not wanting to do anything is depression...I'm not so sure of that. They say the hyperactivity is hypo mania. Not so sure of that either...I don't have some of the classic mania symptoms like overspending, etc.

One thing that doesn't seem to fit with a Cushing's dx is that I'm not that overweight. I do weigh more than I used to. I used to weigh about 120, now I'm about 150. I'm 5'7". At one point, I weighed 170. I went from 120 to 170 within about 3 months, but I was taking risperdal at the time and my doc blamed it on that.

Ok, I guess that's pretty much my story. Lots of symptoms, no dx. Hopefully I will eventually find a doc that is willing to listen. It seems that most of them want to run a few tests to rule out the obvious, then when the tests come back normal, they just give up. I don't have faith in the medical community like I used to.




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