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One year on....

I thought I would start a new thread, as my other was getting a bit long.  So a year on and what has been done and learned?  3 CBCs, one Ultrasound, and one CT with contrast, in addition to at least a half dozen visits to the GP.  I was prescribed prednisolone for 5 days, which only really had a major impact the first 2 days.  
I still have a "palpable" right jugulodigastric node, dysphagia, occasional right ear and jaw aches, and dull aches on occasion along the interior right sternocleidomastoid (for easy reference).  Oh, and my tongue was so swollen for three days I had imprints of my teeth along the sides (last week).  Night sweats are more frequent now but not disgustingly drenching.

The blood work that came back, ran on the 14th, indicated below normal Hct and Platelets.  I will have an endoscopy Wednesday to investigate the dysphagia.  Some bloodwork numbers of note:

Hb: 136 (normal 130-178)
Hct: 0.388 (normal 0.4-0.5)
MCHC: 350 (normal 300-350)
Platelets: 145 (normal 150-400)
WBC: 4.4 (normal 4.0-11.0)

On the Biochemistry report the Doc said "Renal, liver, bone, Diabetes and thryoid tests were all normal.", so that's encouraging. Now I am just anxious about Wednesday.  Nothing like having a tube stuffed down your throat and some unknown issue plaguing you to make you eager to go in.  
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1081992 tn?1389903637
COMMUNITY LEADER
"I thought it best to take a break for a while."
Yep, good idea :)

"I had a Barium swallow test shortly after my ENT exam and it too came back normal."
Yep.

"I had covid about three weeks back, which lasted about five days (only one day of feeling off)."
A hyperactive immune system comes in handy for fighting off infections. It's as if all your immune system "troops" are SAS and Royal Marines. You just don't want them to ever run amok and start attacking *you*.

"Hard to believe 17 months later here I am, no change but no serious diagnosis on it."
Well, it's run of the mill, from my vantage point. This forum is something like a secondary referral centre for mystery cases.

"I've been taking it easy on the runs and bikes and haven't had any heart issues lately, yay!"
That supports the notion that the episodes were triggered by heavy duty exercise. So then now, with no exercise-induced mast cell activation = no reflex tachycardia.

"It sucks coughing in public though because everyone looks or glares."
Yep, coughing does really stand out these days  :)  I'd try an antihistamine, particularly the common OTC Benadryl/diphenhydramine. Because mast cells make histamine. If you do that, let's talk dosage.

Chris, I hope your symptoms stay away. But if they return, I'll recommend a very relevant lab test. Good luck to you.


P.S.  I would understand perfectly if you eventually want to return to the more intense exercising. It's like food for the soul. I think that's very possible to do, but only if taking the right preventative measures (mainly therapeutic supplements) beforehand.


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1081992 tn?1389903637
COMMUNITY LEADER
I'd suspect this:
- exercise induced mast cell activation
- massive release of histamine etc
- profound vasodilation which is effectively akin to reduced circulatory volume and bordering on hypovolemic shock
- that results in very significant reflex tachycardia and probably also increased heart muscle contraction strength, to keep you from passing out

Be very wary in future of passing out and hitting your head hard on some gym iron. Intracranial bleeding.

Other wise, and less likely:
- serotonin storm, esp if on any serotonergic meds or other substances

Even less likely:
- carcinoid syndrome


"I think this is pretty normal for people who run and bike like I do.?"
[46] seems extraordinarily low to me, for someone your height. Your extraordinary cardiovascular fitness is what probably kept you from passing out.

At 46 BPM, be careful you don't get wrongly pushed into a pacemaker.
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1 Comments
As always, thanks for the feedback. Sorry I've been away so long. I thought it best to take a break for a while. It really did help. I had a Barium swallow test shortly after my ENT exam and it too came back normal.  I had covid about three weeks back, which lasted about five days (only one day of feeling off). The lymph node in my neck is still palpable, which all the specialist and docs agree on, but hasn't really caused me to many issues. Hard to believe 17 months later here I am, no change but no serious diagnosis on it.

I've been taking it easy on the runs and bikes and haven't had any heart issues lately, yay! Unfortunately covid has left me with a daily persistent cough, but not so bad I can't workout. I did a recovery test at a lab yesterday and they said I was good. It sucks coughing in public though because everyone looks or glares. Oh well, hopefully it goes away as the weather gets better.

1081992 tn?1389903637
COMMUNITY LEADER
Is there a risk of going to the well too often? The barium test is very likely to be fruitless. When it comes time for a relevant test, the NHS might say that you've had too many tests already?
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1 Comments
Funny you say that, I have been thinking the same thing myself, especially since the dysphagia has dissipated now.  The only reason I think I may want to continue to follow-up is that the hoarseness (croaking, weak, strained, etc.) in speaking is a bit worse.  I can hardly start talking without having to swallow and clear my throat, and when speaking for a while I need a glass of water or frequent swallowing to stay at it.  Also, and most disturbing of all, the night sweats have become an every night occurrence now.  I'm to the point where I'm putting a towel down on the bed and having an extra shirt handy each night.  It's not soaking, like when you break a fever and you can practically wring out your shirt, but it's still wet and leaves me with chills.  I have tried every mix of sheets, blankets, heating, cooling, and what-not.  Sometimes I wake-up feeling weak or sick, but regardless by mid-morning I feel fine and get on about my day with no issue.  

I have read that cardiac conditions can cause night sweats, and just less than a week ago I had another wonderful erythema while working out on the stationary bike.  About 10 minutes into my workout my heart rate went from about 167 to 209 about instantly, I couldn't believe it (Garmin chest HRM).  I put my hand on my heart and sure enough I could feel it fluttering away.  I backed off for about 5 minutes and let everything calm down then finished my workout without getting to crazy (15 more min).  It had never done that on the bike before.  I have since done even harder workouts and had no issue.  Perhaps not well advised but done nevertheless.  How odd. I wear my Garmin watch, which does HRM via wrist, to bed and my sleeping HR is anywhere from 46-53 through the night.  I think this is pretty normal for people who run and bike like I do.?  Anyway, just an extra tid-bit.  I appreciate your insight as always.  
Avatar universal
ENT appointment today went as you (Ken) expected, "everything looks great".  The Doc recorded the whole thing then played it back for me, walking me through everything we were looking at along the way.  He said my vocal chords look great too.  The actual procedure only took about 2-3 minutes probably and wasn't very uncomfortable.  I walked him through a brief run down of symptoms and medical history for the past year.  He did examine my neck (feeling around and such) and did note my enlarged lymph node.  He said he thought it felt soft and was mobile, which he took for good signs.  Given the way I was feeling last night and today (symptoms) I thought for sure we would see something.  But alas he said everything looked normal.  He did offer a barium swallow test and I agreed to it - can't be to thorough.  I need to put some notes down next time.  I forgot to mention the swollen tongue issue and night sweats.  My head was swimming from the time I got to the waiting room.  
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1081992 tn?1389903637
COMMUNITY LEADER
You don't have a cat, right?
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1 Comments
Ken, thank you again for keeping in touch. My blood work has had a downward trend (see my my profile), though nothing way outside 'normal levels' until now. I did have some off and on tooth pain, but I never thought anything of it since it wasn't persistent and very infrequent. I have numerous fillings, top and bottom and sensitive teeth anyway so I've always been skeptical and wait-and-see on tooth issues. I don't have any tooth pain now either,  when biting/eating or otherwise). No cat either, at least not for 2 years now.

My appointment is later today and I will try to follow this up with an update. I have to be honest though, I am more than a little concerned. Not about the procedure, I knew seeking out the appointment what was entailed. I'm more concerned at what will be found.... or deemed inconclusive. I mean only if something major is found is there going to be any difinitive answer. Otherwise I'll get the proverbial shoulder shrug and unclear guidance about what to do next.  But you can't treat what you don't know, and there's no use avoiding it.
1081992 tn?1389903637
COMMUNITY LEADER
The Hct and Platelets are just a tiny bit low. No doc would likely be concerned, unless there were a series of CBCs showing a steady trend downward - then they'd probably just order more CBCs to detect further decline, if any.

The scope might start by going in through the nose. You can almost certainly find videos demonstrating the procedure. My *guess* is it will show nothing. It's more a ruling-out kind of step.

Most definitely mention the swollen tongue, which of course argues strongly against cancer. A cancer wouldn't leap to there, then retreat. Btw, not all immune cells are in the circulation (WBCs). Some reside in tissue, such as mast cells - which secrete over 200 powerful biochemicals. Swelling usually results from histamine, which is made in mast cells.

You don't have any tooth root pain if you bite down on something like a pencil, right?

Good luck, cris.
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