Well, April showers bring May flowers…
I got the test results back yesterday from the ultrasound, the two days of 24 hour urine tests, the plasma blood work, the heart ultrasound.
I showed up to the cardiologist office 30 minutes early. I was eager to hear the results of why this blood pressure and other symptoms have been so wildly out of control.
I was called back to his office. I sat down and waited for him to come in. He entered the room and sat in front of his computer.
Now, he isnt the most warm and cuddly MD I’ve ever met. He doesn’t make much eye contact. But he has a reputation of being one of the best.
He opened up his screen and stared at it. And said, “hmmm… took a breath and said hmmmmm again”
He said, “Well, I’m puzzled. I have results but I have never seen this before so I am waiting for a call back any moment from the endocrinologist”
I said, “ what? What do you mean puzzled? Can’t you just read up on it and let me now what it is? What’s the lab result?”
I was trying to act calm and normal. But felt awkward and curious to know more this minute.
He said, “you have all normal lab results except one that is very unusual. “
Right then a call came through before he could tell me what it was.
After the call he explained the normal range for 5-HIAA is usually 6 and my lab value was 40. It requires to be seen ASAP by a specialist.
He went on to say some other things but all I really heard was “a very rare situation”.
OMG! Again?? What the HElL!! I don’t need another rare disease! I was thinking.
So, it could very well explain a lot of symptoms, but I will find out more on Monday at 8am.
But, I feel grateful that this MD has been thorough to keep digging until he finds out what has been causing the high blood pressure, sweats, flushing red face, and the extreme anxiety all night.
I always feel that there is good with almost all news. This ‘rain’ I am experiencing will be a good thing. We will get to the root of this and flowers will bloom. All will be fine. That’s just the way the world rolls.
I will keep you posted.
Stay healthy my friends
Claudine
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I acquired AOSD in 2008. I have suffered so terribly and have found ways to help me regain my life. This my personal journal of this mystery illness to diagnosis. I hope that I can help others with my experience and information.
Adult Onset Stills Disease 
Hi Claudine,
I’ve been following your blog for over a year now and have been living with my Stills diagnosis for about 3 years. You have helped me in so many ways and I want to say thank you from the bottom of my heart. Now it’s my turn to help you.
I’ve been to countless MD’s and have been on a roller coaster ride with my rheumy (I call him my certified drug dealer – I think their intention is good to ease the pain but there is no concern for healing the root cause). Last year, I found an integrative clinic that has helped me tremendously. The single best thing I’ve done (at their direction) is to change my diet. I’m not going to go into how much it sucks because I want to stay positive here…when you go from your major food groups being beer, salt, cheese and carbs (love those cheetos! and I’m a WI gal) trying to eat healthy is no fun. Then when you learn the healthy food you’re eating isn’t agreeable with your body, it’s even worse!
The reason I know what food is ok for me and what isn’t is because I took the ALCAT test through Cell Science Lab in FL. Look them up – it’s a life saver! I paid almost $600 for my test as I wanted to include as many foods as possible, but it’s the best money I’ve EVER spent. Come to find out, there were foods such as spinach, celery, avocado, corn and oatmeal that I needed to stop eating – all of which I was eating daily. It’s not to say I can never have those things, but the idea is to cut them out for 3-4 months and then slowly introduce back. I’m at the point where I can introduce my first food back and I’m not sure what to pick. Point being, those are all healthy foods so who would think that would be the issue.
I’ve gone gluten free, dairy free, and limit my meats. Low sugar and whole food plant based as much as possible. Again, it sucks! But I’m managing. And I’m now off the prednisone I was on for over 2 years and I feel better than I did 20 years ago. All of my labs are back in normal range. My ferritin, as I’m sure you know is an indicator for Stills, was spiked to 1438 (normal range 8 – 252) and is now back to 346. Still some work to do but I am so close to healing and feel fabulous.
Let food be thy medicine! I wish you all the best with your upcoming appointment and will say my prayers that you can find relief.
Take care,
Dana
Thank you SO much Dana for the information!! I will absolutely be looking into the diet. I am so happy your labs are back to normal. Thai makes me so happy.
It is very frustrating when abnormal labs show up and there are no answers. Yes I completely agree that food is medicine. I recall when my ferritin was 14k. Painful and scary.
I will be looking into as many directions for this new strange lab that has been causing so many problems we suspect Nobody likes being in the emergency room.
Thank you friend for commenting. You may have provided the missing link !!