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@ethanmcconkey

Hi @mittzyvon and welcome to Connect! It must be horrible dealing with these symptoms, and not getting any help from the physicians you go to.

I wanted to introduce you to @sierrawoods @libjen @contentandwell @gailb @jigglejaws94 and @lmherman as they have experienced something similar or have experienced a mystery diagnosis and may be able to help and support you as you search for answers.

Back to you @mittzyvon have you been given any form of treatment at this time?

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Replies to "Hi @mittzyvon and welcome to Connect! It must be horrible dealing with these symptoms, and not..."

No I have been suffering from this for almost a year. Every Dr just shrugs it off or looks at me like I am crazy. I have a 2 year old (I am 39). I am so exhausted every day as this is causing me to get around 2-3 hours of sleep per night if I am lucky. I feel drained, also my bones hurt really bad, especially on my face, I have severe migraines that I didn’t have before also. I just want to feel better or have a dr listen.

@ethanmcconkey @mittzyvon Yes, I too went too long without a diagnosis. When I look back at that I realize that could have been a huge problem. I was finally diagnosed with NASH cirrhosis. When they did an MRI it was discovered that I had malignant lesions in my liver. If you have too many or they are too large it disqualifies you as a transplant candidate. Fortunately, I was slightly under the limitation.

The symptoms I had initially were vague and as with you, somewhat shrugged off. Then I had a much more serious symptom, an episode of Hepatic Encephalopathy (HE), and that should have been a huge red flag but it was not. That was not shrugged but all of the wrong avenues were explored before a neurologist suggested that the problem was my liver.

What I know now is that if I go without a diagnosis for more than a couple of months I will get myself to a major medical center. In my case more than likely that would be Mass General, that is where my transplant took place. I live in southern NH so it's about 55 miles away, but it's worth it. The quality of the medical care surpasses what I can get locally by leaps and bounds.

I hope you find some doctor who can give you some answers. I know how difficult it is to not know what is causing problems. When I did finally get the diagnosis, despite it being potentially life threatening, it was a huge relief to finally know what was wrong with me. The PCP I had when I had my first HE episode suggested that I had Alzheimer's! She was quickly history when the neurologist and another doctor scoffed at that. Even so, the doctor I changed to was stumped.
JK