Originally Posted by AnnieB3

Cute way to respond, Jana! It's like how a friend of mine responds in emails.

So, I think you'd better get thee to a doctor to have them visually check your pancreas. I didn't know your Dad died of pancreatic cancer. I'm so sorry. But then you know it tends to run in families.

I gagged so hard during my endoscopy that I got petechiae all over my face. If they drug you up enough, it's really fast. Yeah, you might have issues afterwards but probably more from the drugs. But I think they will probably want to "image" you.

I want to swear now. Fudge bucket. I hope you're ok.


Annie

Originally Posted by bny806

Does anesthesia affect MG?? When I had my epidural they almost had to intubate me.. I couldn't breath.......

Jana- what happens when you get IV ivig?

Originally Posted by AnnieB3

Yes, those lovely sedating drugs all can affect MG. An epidural might make MG temporarily worse. Puking for 9 months I can't really consider a "blessing," even if the end result is!

Jana, I was in the middle of something so I wasn't as verbose as I normally am. I've known a few people who have had pancreatic cancer. That one really ticks me off. I've wondered for awhile if taking pancreatic enzymes could ease whatever process is going on before the cancer sets in. If maybe a lack of enzymes and an inflammation in the stomach/pancreas area could lead to the cancer - since that does happen with cancer in general. I haven't done a load of research on that but it might be worthwhile if you would look into it.

Pancreatic cancer is just awful. I'm sure you already know -- the ONE year survival rate is LOW (less than 5%, I think). I've been eating yogurt to get the probiotics -- will ask GP if I can also get some pancreatic enzymes. So often, blood sugar is the first sign of a pancreas problem -- so far, my blood sugar has been perfectly normal.

My family has a history of both achlorhydria and adenocarcinoma (GI/colon+ cancer). After doing tons of research, I found that those two are related. Cancer is an "immune disease" too. Inflammation/Infection/Cancer can be on a spectrum and so it's very important to reduce those risks to keep cancer at bay. Do you drink green tea or chlorella tea?

Dad had adenocarcinoma. No, I just drink "regular" tea. Will GET some green tea!

I've also wondered if those electromagnetic field (EMF) attracting underwires in women's bras might lead to breast cancer, since EMF's can cause cancer (i.e., cell phones). I think if there's any family history of cancer, all risks should be reduced. And since the pancreas lies fairly close to that bra line . . .

I HATE underwire bras! I'm not well-endowed -- even less since I've lost weight. Heck, I only wear a bra when I go OUT. It is so hard for me to breathe with a bra on!

It also might be worth your time to see a cancer geneticist. I don't know the statistics on whether males pass pancreatic cancer along to only males, etc. I know factors for it might include toxins but it's worth looking at it from all angles.

Will have to see if I can find a cancer geneticist. Haven't heard of this specialty before.

Sometimes, a gall stone can get stuck in one of the ducts and cause problems like puking. I would bet if you even mention your family history, those colonoscopies will have to wait and you'll get in soon. You can handle an endoscopy! But that won't show the pancreas.

They found Dad's cancer with a CT or MRI. I've had gall bladder tests (ultrasound, I think) in the past 5 years or so. I have IBS -- and my stomach has always caused problems. Anxiety makes IBS worse -- and I've been very anxious about NOT being able to eat what I want. So, I'm a dog chasing its tail.

Anyway, whatever is going on, it's doing damage to your esophagus and throat. That causes inflammation and, well, you know where I would go with that train of thought.

Annie

Originally Posted by rach73

Hi Jana,

Gastroparesis - I have it intermittently. At the moment I am only able to eat one meal a day because my tum still feels full from the day before. I throw up food that is 9 - 24 hours old. Thankfully I havent got to the vomiting stage again yet but that will come. Then I eat just 6 ritz crackers a day and feel dreadful. Although the weightloss is great as Im on the heavy side.

The full tummy part -- yeah, I feel that sometimes. I will look at my profile in the mirror and be SHOCKED that my stomach doesn't LOOK bloated even when it FEELS bloated. I'm pretty sure I've had this all my life. I remember throwing up undigested food when I was a teenager. I didn't realize at the time that this was ABNORMAL!

Gastroparesis can be part of something called dysautonomia (basically a problem with your autonomic nervous system). The autonomic nervous system control all the things your body does without thinking so heart rate, body temperature, breathing rate, blood pressure, digestion.

I have low BP -- typically 90/60 to 100/70. My heart rate is between 55 and 60. My temp is about 97°. Respiration is about 9-10 breaths per minute. I almost passed out in doc's office one time -- he did a check for dysautonomia........took my BP laying down, then again after I sat up. It was ok. I also have an inversion table that I use to help my back and neck -- I can lean back to hang upside down and then lean forward quickly to become vertical -- NO problems with dizziness or anything. I think this would be similar to a tilt test. BUT, with my other symptoms, I have always wondered.........

I bring this up (really no pun intended lol!) as autoimmune diseases ( like MG) are one of the causes of dysautonomia along with ehlers danlos syndrome.

Ive spoken before on this subject and I know a few of you have noticed that your blood pressure readings are becoming low etc. Or you have noticed that on standing your heart rate goes nuts.

My heart seems to stay the same whether I'm standing or sitting. It ONLY goes nuts when I'm in exacerbation and climb the stairs. THEN it POUNDS in my chest. I've even had this documented via a Holter monitor (GP ran the test during an exacerbation a couple of years ago).

I really believe that dysautonomia needs more recognition in the autoimmune disease community. I do believe many of you are suffering with additional issues along with the MG.

Low blood pressure can cause fatigue, excessive thirst, brain fog, nausea and a whole host of other symptoms. That you could be suffering with on top of MG. Simple things like increased fluid intake and additional salt ( I know everyone thinks salt is bad. Believe me without my salt tablets I would rarely be conscious!)

I'm the same way --- I hydrate constantly and salt is my number one "food group". No telling HOW low my BP would be if I didn't use so much salt!

If your interested there is a great website just google Dinet or POTS place for more info.

I hope this helps

Rach

Originally Posted by bny806

They did have me on my side for the endoscopy/colonoscopy though, which i'm sure is standard...

Originally Posted by bny806

Yes, PEX makes me nervous for all of those reasons!! Did you get a rash too?? I'm sure i look like I have scabies at times.. I will literally claw my skin off .. I look like I have eczema.. though it is getting less and less with most infusions..
Agreed with the headache thing!! I had migraines for years (haven't had any since being off birth control pills).. I had a gradually worsening HA in the hospital.. and fell asleep after all the benadryl... when I woke up with that AWFUL headache.. I rang the nurse button to have them bring me some Motrin.. but by the time she got in my room (5 minutes).. I said ok, i can't handle waiting for almost an hour for it to kick in, i need something IV... Toradol was amazing!!!! They tried other things too, but the toradol was the best! no fun at all! So do you just do mestinon for now? I haven't tried any oral meds.. but I would like to just try them.. it would be great to decrease my infusions, as my poor veins are tired..