"Also the ENT appt will probably be pointless. "
I'm back with a update on the ENT. He checked the node I had ultrasound on,which has reduced in size tremendously,and he checked the new one I found. He said all those nodes are normal. The new one is most likely "shotty"(he didn't like the term),but he said it feels normal. Their not growing or super big ,so you will live he says. I have a skinny neck that's why he says I can feel them better than most people. Another ultrasound on new one would be a waste,and their not concerning to him so why waste money. If they wax ,and wane,or grow larger I can come back. =)
Maybe see a hematologost instead of a rheumy etc since we are zeroing in on MCAS/MCAD (which is not the malignant mastocytosis).
But I'd want a hema with actual experience in MCAS/MCAD.
...and with the traits comparison from the psychiatrist, just leave anxiety out completely and see what group you otherwise match. Anxiety is just a confounder here.
Btw, you're doing great with rapidly absorbing knowledge.
Make a note for not-now but for later reading: MTHFR
Also you should take niacin as a test one day. Look on youtube for "niacin flush" examples. If you flush LOTS more than average, that's a big clue pointing to mast cells.
The new node is probably reacting to whatever caused the first node to react. Not lymphoma. For lymphoma metastasis you'd also mainly want to check axillary and inguinal. Lymphoma spreads less locally than other cancers.
For being an overmethylator, let's go off the mainline path a litte to here (she's still an MD):
http://www.judytsafrirmd.com/histamine-methylation-and-mthfr/
then scroll do to "Some symptoms and traits of..." and just let me know simply which group you fit more. There won't be a perfect match.
"I do get weird adrenaline rush feelings with no increase in heart rate on occasion..."
Make a note of what you consumed before that. Maybe it's a dopamine effect, if it includes elation.
"...he kind of brushed off. Maybe he thought I was crazy! "
Yes, this is in your future, too. Most docs don't know about these things and woud scoff. (Example: many people get diagnosed with the immune caused chronic fatigue syndrome only after 3-4 years of seeing and paying for various specialists.)
"...area is sensitive to pain"
Probably bradykinin and Substance-P, and histamine, due to mast cells going off like land mines (degranulating). So we can look here to mainline medecine:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4171343/
Since that is an authoritatibe source, you can print and take that to the ENT (but *not* the more fringe methyation and personality one cited just previously). The majority of docs would probably just scoff anyway even at the PNC cite - they haven't walked in your shoes.
"fibromyalgia"
Except what you have is not musculoskeletal, but is skin. Mast cells are stationed as sentinels in skin and gut and mucous membranes - anything world-facing.
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Be very wary of any prescriptions given. There are better ways to try first.
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I urge you to get a histamine blood test, since that serves as a (relatively inexpensive) proxy tests for many underlying conditions. You could also just order that yourself online, no Rx required.
IMPORTANT: Do you ever flush and/or sweat randomly?
Related to the serotonin: maybe you are what's known as an 'overmethylator'.
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As you can see, I'm throwing out signposts for you to look into. This can save you an enormous amount of time, yet also requires absorbing an awful lot of info. When you feel that your head might explode from too much new information, you know you're on the right track :)
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Also the ENT appt will probably be pointless. Maybe better with a rheumy or immunologist.
"I have some very intense panic attacks"
Have you looked into pheochromocytoma? Very rare, but that moves somewhat up in possibilty if the attacks are completely indepedent of psychological/emotional triggering.
Okay, we're making good progress here.
"I guess I have had usual amount of colds when I was a child."
So we can rule out the class of genetic autoinflammatory cond Also, without early onset, probably rule our genetic immune deficiency syndromes.
"I have been having reoccurring bouts of laryngitis in the last few months that I haven't mentioned either..."
My guess at this moment is histamine raspiness aggravated by the cold and loud talking.
"Then when I return to work after a few days the symptoms happen."
Very good observing skills. That's exactly what you need to do.
"Photodermatitis"
Let's hope it doesn't progress to lupus. Ever get the butterfly rash?
"I have often wondered if all my symptoms,or conditions are part of autoimmune disorder."
Or some as yet general unnamed autoinflammatory condition (which is somewhat different, but not too much).
"but I dont like to self diagnose"
I think that is exactly what you have to do, because e.g. these things are often dismissed as just 'in your head' or 'not important'.
"...or feel like a hypochondriac."
That's only if you automatically jump to the worst case scenario, rather than if you become committed to finding the real story.
"This could all be anxiety related."
I think that's another symptom, not the overall cause.
"I cant take Zoloft..."
I'll mull that one, it rings some bell. Very interesting clue.
"My mom had triple bypass 2 years ago,and is still among the living. =) "
Glad to hear it. But I don't think that's related, since it's so common.
React very badly to bee stings?
Ever try niacin?
I have only had one fainting spell in my life back many many years ago,and it was alcohol related. I had issues with disequilibrium months after that incident,and it continued for many many years. Many doctors,and specialist couldn't figure me out,and handed out the anxiety diagnosis. I do have issues with anxiety/panic disorder I have some very intense panic attacks. I have ups,and downs with my anxiety. Meditation helps. Worrying about my health doesn't help. Googling lymphoma didn't help. I have learned a great respect for the strength people show that battle,or have battled cancer,and I learned much by googling the subject. I also have a history of PVC's diagnosed through many holter monitors. I have been suffering with ectopic beats since I was 23,and Im 37 now. I know much about the heart because of my PVC's.
On the subject of the lymph node it feels like it has shrank in size since my first discovery,and if before I had the ultrasound. I monitor it daily,and I try not to go OCD with feeling it over their on my neck. I'm thinking the ENT might FNA biopsy it ,and send me for another ultrasound down the road if the biopsy comes back negative. I have wondered if their is some scarring within the node. I catch a lot of colds from my two toddlers,and even a bad bout of RSV from my boys months back. I also have chronic scalp acne ,that has been terrible lately. If the acne matters. The APNP I seen seemed concerned about the elevated CRP, but if I have a undiagnosed condition maybe autoimmune,this could elevate the CRP. I do appreciate your medical input Ken_PA. =)
Hi, I wouldn't worry about lymphoma unless the big node gets bigger. It's at the limit of being reactive now, and has a non-malignant shape and internal architecture (as seen with sono). Being somewhat fixed isn't critical.
I'd instead look into fibrosis in nodes, and how that relates to immune cells -- and even how immune cells can relate to anxiety.
Do you still have fainting?