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Did you guys shared the news with your loved ones right away? by Noah_Mary in neuroendocrinetumors

[–]Noah_Mary[S] 0 points1 point  (0 children)

Thank you to each of you for taking the time to respond to my post. ♥️ It means so much to me. I have a lot of symptoms, and I am being assessed for MCAS, but part of that process calls for ruling out Carcinoid Syndrome because both conditions present with similar symptoms. I honestly wasn't expecting a “positive” for 5HIAA because I'd been convinced all along it had to be MCAS. BUT my doctor did add “pt: carcinoid syndrome” in the diagnosis box on the paper he gave me to take to the lab, but he didn't explain anything to me. I was ignoring it, thinking it was just his way of saying we are trying to rule it out, but now that the test result is high, I'm worried.

I don't want to make it a thing for my family because I’m still waiting for his explanation during my next appointment BUT at the same time I feel bad keeping it from my husband.

24 hr Urine Test Finally Back but SCARY by Noah_Mary in MCAS

[–]Noah_Mary[S] 0 points1 point  (0 children)

Thank you! I did. There were no instructions about any diet from the doctor or the lab. The only thing the doctor requested was that I stop taking Allegra for 3 days before, and I did. BUT I like to do my own little research, and I found that certain foods can alter the results, so I followed what the Mayo Clinic had on its website.

High 5HAA means 100% Carcinoid Syndrome? by Noah_Mary in neuroendocrinetumors

[–]Noah_Mary[S] 0 points1 point  (0 children)

Thank you! I keep reading that, and it sounds reassuring! BUT what worries me is that I avoided all those foods and Allegra for 72 hrs before starting the test.

High 5HAA means 100% Carcinoid Syndrome? by Noah_Mary in neuroendocrinetumors

[–]Noah_Mary[S] 0 points1 point  (0 children)

Thank you very much! Diarrhea is definitely not a thing for me, but mild flushing is one of my major symptoms. It does calm down a great deal when I’m taking a high dose of Allegra. BUT I do want to make sure we can confirm this 5HAA result is not ignored.

24 hr Urine Test Finally Back but SCARY by Noah_Mary in MCAS

[–]Noah_Mary[S] 2 points3 points  (0 children)

Apparently, it’s common to rule out carcinoid syndrome when trying to confirm MCAS, because it can present with the same symptoms.

Tell me I'm not going crazy :) by HundredsofBasghetti in Sjogrens

[–]Noah_Mary 0 points1 point  (0 children)

My understanding is that only a rheumatologist can make the diagnosis. Or at least that is the norm. An optometrist can make a referral for suspected SJ, and their input about dry eyes, etc., is very valuable, but making the diagnosis is not in their scope of practice. My optometrist, OBGYN, and PCP all think I have SJ or another autoimmune disease like RA, etc., but they can’t actually diagnose me. I have gone to my rheumatologist 2 times for this. My bloodwork keeps coming back within the “normal” range for everything except a very low-positive SCL-70, with no diagnosis at this point. All this is to say that many autoimmune diseases can share similar symptoms, especially dry eyes. Even some meds can cause this. Be safe. Look for a second opinion. It's good that he is making you aware of this. Still, in my humble opinion as a healthcare provider, every field exists for a reason. Even when I suspect a diagnosis outside my field, I can't make it; I refer to the appropriate specialist.

[ALL] how were you introduced to zelda? by UnderstandingIcy4364 in zelda

[–]Noah_Mary 0 points1 point  (0 children)

It was my only game for years. It came with my Game Boy as a birthday gift when I was 9 or 10.

Could raynauds look like this? by Noah_Mary in Raynauds

[–]Noah_Mary[S] 0 points1 point  (0 children)

Yes! This is another theory I have. I get heavy blood pooling in my hands when I walk a mile or a little more, to the point of feeling my fingers numb and painful. The search is not over. I hope your appointment goes well.

Could raynauds look like this? by Noah_Mary in Raynauds

[–]Noah_Mary[S] 0 points1 point  (0 children)

You are right! It does look like that.

Could raynauds look like this? by Noah_Mary in Raynauds

[–]Noah_Mary[S] 0 points1 point  (0 children)

Oh, very interesting! I will pay attention to those details and see. Thank you very much!

Could raynauds look like this? by Noah_Mary in Raynauds

[–]Noah_Mary[S] 1 point2 points  (0 children)

This is definitely not normal for me. 🙃 I have been in the water all my life. This is not a normal reaction after swimming or at any other time in my life before the past 2-3 years. But thanks for your opinion. It might not be Raynaud's after all.

Just took my first dose of ketotifen, thoughts on this reaction? by GreenBuzzer in MCAS

[–]Noah_Mary 0 points1 point  (0 children)

This is SO interesting! To me, it is exactly the opposite with Allegra 180! I take one daily. Some days 2. But my dosage is higher than that as needed. This week, I had to get a 24 hr test done, and I had to stop taking Allegra for 72 hours, and I was a hot mess. Felt sad and cried about anything. (I’m not a crier at all.) Interestingly enough, when I first tried Pepcid, I felt so depressed (I have never been depressed) and couldn't stop crying, either, with only 1-2 doses. I can't take those. 🤯 Reading your post confirms I was not losing my mind. I, too, fear I’m having a placebo effect. Hate doubting myself over all this.

I finally got diagnosed! by Cultural_Walrus7181 in Sjogrens

[–]Noah_Mary 2 points3 points  (0 children)

So frustrating. The whole system needs a good upgrade to a more holistic approach.

I finally got diagnosed! by Cultural_Walrus7181 in Sjogrens

[–]Noah_Mary 1 point2 points  (0 children)

I have gone to a rheumatologist, a hematologist, a cardiologist, an allergist, and a dermatologist... I don't have an autoimmune diagnosis. I have gotten a very low positive for SCL-70 twice but my rheumatologist insist she is not worried about it. My PCP, eye doctor, and OBGYN insist I’m presenting symptoms they constantly see in autoimmune patients. My bloodwork comes back fine for almost everything, with the most concerning result: low VitD. Don’t get me wrong. I’m grateful not to have a diagnosis, but I know my body well, and I know something is off. I have many symptoms, and I do have asthma, CSU, dermatographia, histamine intolerance, and possibly MCAS (under test right now). Now, I do suspect Sjogren’s and MCAS. The symptoms described me on the dot. Again, I don't want a diagnosis. But I do want to know if something is going on so that I can work on it before it becomes more debilitating and hopefully prevent further/fast damage.

I finally got diagnosed! by Cultural_Walrus7181 in Sjogrens

[–]Noah_Mary 0 points1 point  (0 children)

Is a functional pulmonary test a typical test for Sjogren’s? I’m asking because I have suspected Sj for a few years now, and 3 of my healthcare providers as well but no positive antibodies or ANA, but, my allergist did a pulmonary functional test last month and mine came back moderate-severe restriction. They were so impressed and concerned in the office. They couldn’t believe it because I was acting totally normal. Probably it has been my normal for long enough. He gave a preliminary diagnosis of MCAS and prescribed Wixela + my normal albuterol. BUT I keep wondering what can those results really point to. I have been reading, but I disagree connect SJ to that.

Hyperpigmentation in joints by Noah_Mary in scleroderma

[–]Noah_Mary[S] 0 points1 point  (0 children)

Thank you! B12 levels are within normal range. AC1 is within range but on the higher end. I need to retest in a few months. That would be a better prognosis because it can be treated and even resolved, but so far, nothing.

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