MikeO

@MaineDougGood Luck with your Attorney meeting. 

53 minutes ago, Pistol said:

Drink more

Haha only if i had a dime for everytime i have been told this. passing out all over the place even when trying to get to comply with the drink more water recommendation and then be told to drink more water after i report the episodes. guess who got fired!

35 minutes ago, MaineDoug said:

@MikeO,

Interesting! Any changes in the electronic medical record will show up on audit. 
 

This is a s allegation if you are right. You can request an audit of your record for changes made after the fact. 

Yeah might need to to do an audit. what that gets me well not sure. money would be great...hahaha more so that it does not happen to other folks.

1 hour ago, MaineDoug said:

I know that most of you out there have had the experience of getting new and scary diagnoses, for most of us several I assume. 
 

How do YOU deal with these situations? 
What’s helped? 
What hasn’t? 
Any other tips? 
 

I find that exercise, education, family, and friends help. Also Yoga, Meditation, Chanting, and Prayer. 
 

🙏

well all i can say is to look into your inner self. hardest thing i have had to do was open heart surgery and my carotid endarterectomy both could have been life changing.

Rest well just the way it is and learned to accept and adapt. life is good and still has stuff to offer. Yes exercise is one that helps for sure...and being able to compare notes as well as reaching out to support groups.  

3 hours ago, MaineDoug said:

changed information!

Thanks Doug! i have seen info changed a number of times. Sigh some times up front "not final till the doc reviews and then other times not till i report issues "anion gap is one that changes without notice" i do recall having a blood test at UW and the gap was elevated 12 if i recall right so the gap was changed to 8 after i reported getting sicker than a dog that same day.

thanks for the tips on the acute pancreatitis. so far i trust gastro so far I and was double teamed by Docs at my first visit and they were not adverse to ordering tests.

Will see where this leads. i do have my questions lined up for the next visit. sure there is more to come.

I am just glad you have a path that is helping you.

Mike

easy light lunch or snack. keto tortilla grilled with black beans and pepperjack cheese. could put a bit of sour cream on the side for dipping. this did not affect my glucose levels!

@Sarah Teeare you drinking enough fluids? i have been on a few short term meds were i needed to increase my water uptake.

16 hours ago, MaineDoug said:

My GI doc is backtracking fast!

Glad you mentioned this. The Faint clinic i was going to has been doing this for the last year and i have called them out on it every time. i don't even feel bad for doing it. my take is if they can play ignorant or even lie and not be nice then i have no issue telling them what i really think, they are not above me.

I do go into GI next month will be interesting were the visit goes. My Endo still think i have some sort of sporadic Pancreas inflammation going on. being treated for SIBO has helped so i don't think i have PI but still get occasional sudden GI pain just not very often.  

16 hours ago, MaineDoug said:

HOW COULD THIS HAPPEN???

I don't have an answer how but it does. just glad you are now getting help moving forward. to be honest i have been in the same boat as to the health care system knowing i had various health issues and burying them.

My diabetes was known since 2017 and the cardiologist team looked the other way. still burns me. 

One of my favorite dinners. roast was done in the slow cooker and rice was cooked in the Instant Pot

@MaineDougjust fantastic to hear that your first dose of CREON made a significant improvement! hope the treatments resolves many of your symptoms moving forward.

1 hour ago, MaineDoug said:

Just Ughhhhh,

What goes around…just got my stool labs back, severe Pancreatic Insufficiency. 🥺

No wonder I’ve had years of digestive issues. Another diagnosis. Another round of docs, tests, meds, suffering. 
 

Just Ughhhhh

My endo still suspects some pancreas issue (SIBO provoked he does not know)  so more for gastro albeit i tested negative for what they tested for. So sorry for the PI diagnosis but at least there is a path forward.

Wish you the best!

4 hours ago, Pistol said:

1 clove minced garlic

I love the garlic....oh so good.

second attempt at making hummus. much better. came out smooth and creamy. i did remove the outer skins and used the blender this time. At first the ingredients was to thick for the blender so added about a 1/4 cup of water or so and worked great. thanks @Pistol and @albertspafor the tips.

19 hours ago, MaineDoug said:

it’s just your new normal

I have had Doc's say well "it's just the way it is" and here i am sitting there thinking "what are you seriously kidding me". Little do they know at the time remarks like that just stirs the bees nest (with me any anyways). 

Hope all come out well for you.

13 hours ago, Sarah Tee said:

It’s my impression that doctors have a sort of brotherhood (for want of a better word) that means they can contact each other to ask for advice about difficult or unusual cases, even across jurisdictions and borders.

Am I right about this?

I have had my medical providers do a phone consult and they are across different medical organizations. if you are talking across the pond, not sure about that.

4 hours ago, albertspa said:

Looks great! A little tip is ice cubes. Adding them to the food processor / mixer does wonders for smoothness! Also did you "deshell" them? The little skins around the chickpeas, if not removed, make the hummus a bit coarse. Best way to do it, is rubbing the chickpeas between your hands in a bowl of water and then the skins should just float to the top (I typically cook dried chickpeas, instead of using ones from a can, cause the shock from hot water to cold water separates the skins more easily, just like with potatoes). I'm sure you've done your homework and added olive oil and tahini, which also contributes loads to the smoothness. ⭐

No i did not deshell them. did think about when i saw the coarseness after running them in the food processor. I will try the ice trick as well thanks for the tip. I did buy dried chickpeas and cooked them in a pressure cooker, worked great!

I did buy tahini. was a little messy to work with but tasted good. 

38 minutes ago, Pistol said:

@MikeO I add the chickpeas slowly to the food processor while it is running, and if too thick i add a bit of the liquid the beans were in. 

Thanks! good tips that i will try next time.

@Sarah Teethanks for the posts. yes i have read this even my daughter was treated with LDN and it did not work. my take is i am not waiting for a miracle drug to help just like diabetes has no miracle cure. what one can do to make there life or try to make their life better works. for sure i am not waiting for a year or two to see a autonomia specialist just to be told to drink more water. been here...

In the meantime folks should be working to help themselves.

1 hour ago, mehaller said:

After learning I am not a candidate for IVIG, my neurologist (VA/OHSU) wants me to be seen by a neuromuscular specialist for my adrenergic orthostatic hypotension.  Interested to learn if others with OH have gone down that road.

Better health to all in the new year.

wish you the best.....mike.

No i have been turned away from the neuro folks.

1 hour ago, RecipeForDisaster said:

Positive ANAs in 2 different ways wasn’t enough for me to qualify for IVIG. My autonomic issues and HYCH didn’t help, either. I had to have a positive SFN biopsy, and I think my abnormal FGFR3 result also helped. I was never offered any kind of DMARD or other biologic, but then I could not find a reasonably helpful rheumatologist, either. It took years to get started, and it’s expensive and not enjoyable, but at least it’s helping my neuropathy.

Glad to hear you neuropathy has improved. 

On 1/1/2024 at 8:51 AM, Sarah Tee said:

Well, it remains a slight mystery to me why there are clinical trials, small studies and case studies of people with POTS receiving IVIg, but almost nothing on anyone trying DMARDs or biologics.

Aren’t these often cheaper and easier to get than IVIg? Just wondering why specialists seem to go straight to IVIg in the immune area.

I might email Dysautonomia International and ask.

Maybe DMARDs and biologics just don’t target the right bit of the immune system?

Good question. please post back if dysautonomia international gets back to you. i know the folks in the state i live in get the IVIg infusions and it's not just POTS folks (nOH and OI people as well) They don't get the infusions out of the blue and need to test positive for some immune tests (i see ANA come up frequently).

Some folks respond and others do not.  

First try at homemade hummus. turned out ok. tastes great but is not a smooth as i thought it would be. next time i will try the blender instead of the food processor and a more water to help out.

For me it is drink more water when i was already drinking a gallon of fluid a day when i was passing out just trying to stand up to get more water to comply and then told we don't want blood pressures to help see what is going on. issue was i was way over medicated

Yes i know one Gal that coded on a tilt table test. She was not on meds at the time. While she did do well initially she did go sudden tachycardia and was telling. sure it was not a heart attack per say just more of it was too much to handle. Beta blockers are a POT friend i'm leaving out the (s) cuz there are so many chronic issues that fall into the syndrom portion.

Being a cabg 4 person i can tell you i know what a heart heart issue feels like or when i become vasoconstricted and i know it. not sure if POTS will cause a heart attack out right but my one number one symptom is it feels like someone is squeezing my heart and i start heaving and whoosh a bit. Stress can bring this on as well.

If you feel like you are having a heart issue i do encourage to be checked. I have been stressed tested while on meds so we know they work for me as i can't even hit my expected heart rate. The right meds have helped.

Best.....Mike