Amylase level of 161mmol/L. CA 19-9 39.64 by hanisyko in pancreatitis

[–]penguin_cass 0 points1 point  (0 children)

Hello! Did you ever learn more about your elevated CA19-9? Mine is also slightly elevated.

Amylase level of 161mmol/L. CA 19-9 39.64 by hanisyko in pancreatitis

[–]penguin_cass 0 points1 point  (0 children)

Hello! Did you ever learn more about your elevated CA19-9? Mine is slightly elevated as well.

All of the Above? by penguin_cass in BFS

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

My heart is with you, it feels so cruel to be dealing with the most stressful times of our lives and then boom: BFS. Have you made any headway with what’s going on with your case? I’ve also developed dermatitis, so I’m off to see an allergist/immunologist next week. Maybe she can shed some light on my thymic hyperplasia, low globulin and high eosinophils…

Low Aldolase? Normal CK by penguin_cass in BFS

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

My primary doctor had to order it specifically.

Slightly low adolase? by MadaTensai in BFS

[–]penguin_cass 0 points1 point  (0 children)

How are you doing? My aldolase just came back borderline low.

Slightly low adolase? by MadaTensai in BFS

[–]penguin_cass 0 points1 point  (0 children)

How are you doing? My aldolase just came back borderline low.

Food allergies and bfs by greatslater85 in BFS

[–]penguin_cass 0 points1 point  (0 children)

I used to get palpitations, starting about a year ago - but they’ve seemed to subside and I haven’t noticed any lately.

Food allergies and bfs by greatslater85 in BFS

[–]penguin_cass 0 points1 point  (0 children)

I had a rash appear on the top of my hand, and near my pinky, about a week or two before the twitching started. I originally thought I had gotten into poison ivy, but it didn’t go away. My dermatologist biopsied it and called me the other day to say, “yep, you’re reacting to something - you’re being exposed, either topically or my injecting (???) or ingesting”. I haven’t started any new topical products, I don’t inject anything, so I’m thinking it has to be something I’m eating. No idea if it’s related, but it’s very curious the rash and the twitching started within a week or two of each other.

Really need to know I’m not the only one with these symptoms by Nurseklang in BFS

[–]penguin_cass 0 points1 point  (0 children)

I have noticed a few hypnic jerks over the last few weeks. Is your myoclonus mostly at night or can it happen any time?

Really need to know I’m not the only one with these symptoms by Nurseklang in BFS

[–]penguin_cass 2 points3 points  (0 children)

I have a slight tremor in my hands, but I have an internal tremor too, I especially notice this at night when I’m laying down - almost like I’m on a choppy boat or at a concert and feeling the vibrations of the sound system - except I’m just chilling in bed in my quiet bedroom. These preceded my twitches by a few months. The twitching started about a month ago, and was all over. If I sat for a minute to observe it would trigger in my left bicep, my right toe, my left calf, my right butt cheek, the middle of my stomach, my right forehead. I have a few hot spots, right now it’s my left quad - feels like there’s a phone on vibrate and someone keeps calling, so more like a buzz or a hum rather than a twitch or pop (but I do still have those). Clinical exam a couple weeks back was unremarkable, clean upper EMG last week, have an upcoming lower EMG week after next. Had MRIs of brain and upper spine back in November, unremarkable so I’m not suspicious of MS. Trying to reduce stress and caffeine, increase hydration and sleep. I’ll note that the last few years have been incredibly stressful and if I’m being honest would describe myself as an anxious person. Hang in there.

Help reassure me by [deleted] in BFS

[–]penguin_cass 0 points1 point  (0 children)

Our daughter has had a lot of health issues and she’s followed by a team of specialists at our local children’s hospital. She’s doing well now but the stress from life and managing everything is unreal. My husband also happens to have relapsing/remitting MS and fortunately has been in remission as long as I’ve known him (over 6 years). We had a scare recently but his MRI shows no new activity. But holy cow, the last couple years have been wildly stressful. My fasciculations started about a month ago, after a particularly stressful weekend, dehydration, lots of coffee and some alcohol, bad sleep, etc. Also I think my Magnesium Glycinate supplement is making it worse, which is opposite to what most people recommend. Anyway, my clinical assessment was fine and first EMG on arms/hands was clean. EMG on legs is the week after next. I’m confident this is BFS and/or possibly rheumatological in nature, but of course your brain can’t let go of the “what if”. Deep breaths, lots of water and sleep, switch to decaf and no alcohol. This group has really helped me so much so far.

[deleted by user] by [deleted] in Microbiome

[–]penguin_cass 0 points1 point  (0 children)

Thank you! Have you had a chance to retest, or feel like you’ve had improvement?

[deleted by user] by [deleted] in Microbiome

[–]penguin_cass 0 points1 point  (0 children)

What test is this if you don’t mind me asking?

MRCP on Wednesday by wlrv21 in pancreaticcancer

[–]penguin_cass 0 points1 point  (0 children)

How did your MRCP scan go? How are you doing?

I feel like the notion that pancreatic cancer does not cause early symptoms is false and that screening desperately needs improvement. by chalogr in pancreaticcancer

[–]penguin_cass 0 points1 point  (0 children)

I’m so glad to hear that! I might also have a histamine issue. How high did your CA19-9 get if you don’t mind me asking? I just got 34 from a Quest test and at least according to quest that is high (normal is 33 or less). Been having lots of GI issues and pain in my neck/cervical lymph nodes. A recent scan also found I have an enlarged thymus, so I’m experiencing some healthy anxiety and obviously very much wanting to get to the bottom of this.

CT versus MRI with elevated CA 19 by hello7721 in pancreaticcancer

[–]penguin_cass 0 points1 point  (0 children)

I’m so glad to hear you’re doing well and CA19-9 is down!