Originally Posted by AnnieB3 (Post 935042)

Jana, I think you need to see your primary doctor and/or a gastroenterologist. Food shouldn't come out in the same condition it went in. ;)

Yeah, I'm gonna have to see a doc. Will go with my GP, first. It takes AGES to see a gastro around here -- they are soooooo busy doing colonoscopies.

I understand the GI tract pretty well, since I had achlorhydria (no stomach acid) for years before it got diagnosed. I had increased infections, reactive hypoglycemia from undigested food "dumping" into my small intestines, etc. That lead to my B12 deficiency and then, finally, figuring out what caused it all.

Annie, I thought about your lack of stomach acid WHILE I was throwing up. I think mine's ok -- no other symptoms. BUT, I am slightly anemic, now -- found that at my last GP appointment. I took iron for a couple of days -- made my stomach worse (apparently this is common). Now I'm eating every iron rich food I can find.

Peristalsis is how food moves through the GI tract. Gastroparesis is when the stomach doesn't empty food right away. Both can be affected by MG. But I suspect that's not the only problem.

Undigested food on "the other end" means that you aren't digesting your food on the front end. It doesn't have to do with how fast it moves through the GI tract but how it's being digested. It usually happens when you don't have enough stomach acid. You can have hypochlorydria (not enough stomach acid) or achlorhydria (ay-klor-high-dree-ah). You may be lacking in certain enzymes too, which is even more complex.

My food appears to be digested "in the toilet". (Can't believe I'm being this discriptive!) It only looks undigested when I vomit.

Achlorhydria is compounded by food sitting in the GI tract, undigested, and putrefying. All of this can lead to leaky gut, infections, inflammation and more autoimmune problems.

I could drone on and on about this topic, so I'll stop there. :cool:

Do you feel bloated after eating a meal? Do you ever feel hungry within a half an hour to an hour and a half after eating? Does food move through quickly or slowly (from start to finish). It would help to keep a journal of how you feel from when you eat to, well, when it's flushed.

Nope, I don't feel bloated.....but, Topamax killed my appetite so I don't eat very much. I feel hungry at meal times, more or less. I have noticed that it can take a couple of days before food I eat "comes out". (The iron pills made my movements very dark -- and it was a couple of days after the first pill before I noticed the color change.) Apparently, my entire GI tract is "lazy". :rolleyes:

Other things that significantly affect how food moves through are being hydrated enough and having enough fiber.

I have been constipated ALL of my life -- until Mestinon. I am the QUEEN of fiber -- I search for fiber-rich foods. I also hydrate more than anyone I know -- in excess of 80 oz per day.

What I found most interesting when I researched this back in 1999 was that you need acetylcholine to make stomach acid (and gastrin and histamine). I found an entry in an old encyclopedia that listed something called "Myasthenia Gastrica." I guess no one pays attention to it anymore because it's not really talked about.

"Myasthenia Gas´trica: weakness and loss of tone in the muscular coats of the stomach; atony of the stomach."

Whatever is going on is not normal. Do you need an expensive and invasive upper endoscopy to figure it all out? Not necessarily! What did our ancestors do before electricity and machinery? :rolleyes: Maybe do some research and then talk to your primary doctor.

I read about the endoscopy -- and sort of FREAKED. With my swallowing issues (you are usually awake) and the dangers of anesthesia in MG.............I agree -- having this all in my head BEFORE I see a doc is THE way to go!!

What I take to digest my food - which I don't recommend taking until you have that talk - is Betaine HCL. It's a mild acid, usually made from sugar beets. When people hear "acid" they often think of battery acid or other very dangerous things. ;) If you don't have acid or not enough of it, this is not a dangerous thing to take but a very good and useful thing. If you find out you have this, we can always go on ad infinitum about it later.

:hug:
Annie

And I'm so worn out that I didn't even bring up pancreatitis. If you have that, it's serious. My dog Teddy had it. I highly suggest seeing a doctor right away. What Teddy had to do was have pancreatic enzymes on his food and have a high fiber/low fat diet. Again, you have to figure what's going on first. There could be more than one thing.

I know -- pancreatitis crossed my mind. My dad died from pancreatic cancer, so it is always "lurking" in my brain.

Thanks SOOOO much, Annie. I feel better just "talking" about it. Waking up in the middle of the night with stomach aches........so distressing. I don't have this problem all the time -- it seems to go in cycles. I had even thought about Crohns.

I've upped my Mesty the past couple of days -- after reading that it is sometimes used for Gastroparesis. I do think I'm a little better.

Originally Posted by bny806 (Post 935067)

I have stomach issues (of course I don't have a firm diagnosis)... but I had bad gastroparesis when I was pregnant.. i threw up the ENTIRE 9 months with my daughter.. I would be so excited I made it 8 hours without throwing up and then my last meal (totally undigested- sorry tmi).. would all come back up.. it was awful!
My pregnancy with my son I also had the same issues , though not quite as bad.. and then when this whole thing really got bad, i had major GI issues (malabsorption).. I lost a ton of weight due to this, i was soooo scary thin.. I had a full GI workup - gastritis and esophagitis, otherwise normal.. it was presumed I had celiac.. now If I go too long without IVIG not only do the rest of my symptoms get worse, but so do my GI symptoms (they return)... very odd.. I am gluten free x 2 years now.. it seems to really help

Originally Posted by AnnieB3 (Post 935083)

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.

:grouphug:
Annie

Originally Posted by bny806 (Post 935085)

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 (Post 935096)

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. :cool: 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! :D

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. :hug:

Annie

Originally Posted by rach73 (Post 935140)

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 (Post 935270)

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

Originally Posted by bny806 (Post 935284)

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..

Originally Posted by bny806 (Post 935309)

Immunosuppresants do make me nervous for that and many other reasons.. but if need be I'll do them... I am sick enough as is with the kids bringing home germs at this point though!
funny you say that about the frying of the brain!! I have said that many times- I sware I get a little dumber each time I have gotten meningitis!! I have the worst brain fog during those times, its really really strange!!!!


I will be curious if they will let me try mestinon as a trial in the near future.. I just worry about the long term effects of my body on IVIG.. esp since my body does seem to have an allergy at some level to it!

Originally Posted by AnnieB3 (Post 935404)

Jana, What happens if you have a protein shake? Well, besides not being able to swallow it well. Though you can always put oatmeal in it to thicken it up but that would defeat the liquid experiment.

Never tried a protein shake. I don't even eat much meat -- just chicken and fish. I don't drink milkshakes, either.

I was wondering if liquid food went down. Due to my lack of stomach acid, I'm on Mestinon Syrup. It's a PITA due to it's size but it absorbs more quickly. I've never even tried the tablets.

I have to tell you that I think the drug companies, via antacids, are making us ill. People get sick from pigging out and then pop an antacid to feel better. But if you don't have enough stomach acid, the whole cycle keeps getting worse. Then you move on to acid blockers. Again, worse. Why would the human body have stomach acid in it if it wasn't good for us? The percentage of people who have too much is like less than 5%. That's not who is targeted for the sale of the antacids/acid blockers. :rolleyes: To them, we're just a revenue stream.

You really can't say for sure if this is a acid or motility issue. If food isn't digested in the stomach - which is the main job of the stomach - then you really can't blame that on paresis. If the food coming up is more liquified, then I would think it's paresis. But that doesn't sound like what's going on, especially when it's had 8 or so hours to digest.

This makes TOTAL sense!

If you put a piece of food in a bowl, which literally has complete paresis, and then pour some liquid acid on it, it will eat away at the food. That's what came into my mind and made me still think it's an acid issue. Or the Coca-Cola experiment where it's so corrosive that it "digests" steak. ;)

Okay, I have to ask . . . how's your B12 level? Iron, calcium or protein?

B12 was checked about a year ago -- OK. Iron is low -- I took tablets until they made me nauseous. Now I'm eating VERY fortified cereal. Calcium was OK -- don't know about protein. I think they may have checked levels in my urine? If so, it was OK, too.

Also, the cabbage family (broccoli, etc.) is notorious for causing huge amounts of gas. :icon_redface:

:( Yeah, and these are my FAVORITE foods!! Love me some Brussel sprouts!

I'm glad you chimed in on this, Rach. I was hoping you would too.

Did your Dad have cancer of the pancreas alone or was it elsewhere? My grandparents had adenocarcinoma that started in the colon and then spread to organs from there. That's a significant difference.

He had adenocarcinoma of the pancreas. It spread to the liver, diaphragm, and lymph nodes before being found. Started in the tail of the pancreas, so he didn't have the early tell-tale jaundice. He lived about 3 or 4 months after diagnosis.

Do you know if you have a hiatal hernia?

I don't think so. BUT, my dad did and my sister does!

http://www.webmd.com/digestive-disorders/hiatal-hernia

Whatever is going on, it's making you miserable. I'm glad you have such a good primary doc to help you.

Thanks so much -- and I have good people here helping me, too! :hug:

Annie

http://www.mayoclinic.com/health/dig...system/an00896

http://digestive.niddk.nih.gov/ddiseases/pubs/yrdd/

Originally Posted by rach73 (Post 935477)

Hi,

Yeah I still lurk lol! Ive been on more frequently recently as Ive developed swallowing problems that seem to ease with mestinon. I havent bothered to tell any of my Drs as they all insist I dont have MG and because they are actually trying to help me for the first time in years I dont want to rock the boat. Its a sad situation to be in!

I have a wonderful speech therapist who is learning about Ehlers Danlos syndrome with me to try and help the swallowing and strengthen my voice because it goes really sexy after a few minutes of talking lol!

Jana - that wasnt a poor mans tilt table test. How to do it is to lie down in a darkened room for 20 mins and relax. Take your resting heart rate. Then Stand (dont sit just stand) and dont move (your body if you have problems will try and jig around to stop you fainting etc) Take your heart rate at 2 mins, 5 mins, 10 mins, 20 mins. If you can stand for that long. POTS is indicated if your heart rate goes above 120bpm or raises by 30-40 bpm and stays up.

Oh, Rach!! Thanks soooo much! I AM going to do this! I've almost passed out so many times from kneeling/squatting and then getting up -- there MUST be something odd going on. (My brain fog -- I forgot about this until I read your post).

I actually have done the full on test and threw up at the 10min point. Which was fun because I was strapped to a table at the time. The poor nurse had to play catch which was above and beyond the call of duty.

You dont just have to take your heart rate if you have a blood pressure monitor you could use that if it includes HR as well.

Your BP is considered low normal in the UK you have to be below 90/60 to be classed as having a low bp, but the world health authority says 100/60. I basically feel ill if I am below 115/60. I havent had blood pressure that high for years and I will regularly drop to 72/40! What fun.

When I get a bad migraine, my BP is "normal" -- LOL. Like 120/80 or even 130/85. I also have "white coat" -- so, my BP seems normal at EVERY doctor's appointment. :confused:

Im glad you found the info useful

Rach
ps High Annie!

Originally Posted by AnnieB3 (Post 935601)

This will be quick for now, though I have more thoughts.

In my family, gallstones are directly related to not enough stomach acid. You can have no symptoms to a lot of them. My Mom's belching and other symptoms were not alleviated by taking her gall bladder out. Only taking Betaine HCL, 12 years later, made her GI symptoms go away. And she had a low B12 too. Betaine is a very simple solution to no stomach acid as opposed to surgery.

Your low BP could also be a sign of Addisons.

Originally Posted by southblues (Post 935691)

They may be able to take out your gallstones nonsurgically by going down your stomach and into your gallbladder with a scope thing. I was almost sure that I had gallstones, but I didn't. The symptoms went away on their own with no diagnosis.

Originally Posted by rach73 (Post 935839)

Hi Jana,

with the passing out you could have ncs (neuro cardiogenic syncope - fainting due to a drop in blood pressure on standing). Or it could be NMS which is neurally mediated syncope which is low bp causing fainting. Dont quote me on this my brain is a bit fuzzy on this and you would need to check the dinet site.

I will look these up!! Thanks!!

I would do the TTT poor mans version as soon as you are able and if you dont already have one get a BP monitor.

Will try this today. I have two BP monitors -- one for arm and one for wrist.

Keep a diary of how you are feeling and note what your bp is at the time. Remembering your brain will feel a drop in bp before its measured with a bp monitor and it can be up to 20 mins before your bp monitor will show a change in pressure. You can also have a normal BP but have poor cerebral profusion ( poor blood flow to the brain) and it can cause brain fog. Hence why with dysautonomia you can feel dreadful but still have a normal bp!

Well, I CERTAINLY have the "brain fog"! I already keep a migraine diary.....will start including this info.

The good news is Mestinon (I cant remember if you take it apologies) is used in people with low bp and syncope (fainting) to boost their bp when standing. Mayo clinic discovered this and quite a few people on Dinet use mestinon - small world huh?

Yes, I take it -- LOVE my Mesty!! I actually don't know if I'm STILL as prone to fainting from squatting to standing................due to MG weakness, squatting is difficult, if not impossible. If I get down on the floor, someone has to help me get up. I also can no longer mount a horse OR get into the back of the pickup truck without a step stool or chair.

I hope this helps Jana

Hugs
Rach

Originally Posted by rach73 (Post 935871)

Hi Jana,

I'm glad my rambling posts are helping!

Yes, Rach!! Helping me to understand. I was diagnosed very easily with MG -- positive on binding, blocking, and modulating. So many here have a difficult time being dx -- I guess it is MY turn to have trouble figuring out what is wrong. :(

Weak leg muscles can also be a symptom of POTS or dysautonomia, so add that to MG and thats a heap of trouble!

As I say google Pots place or Dinet and you will find a wealth of info. Most people dont just have Pots the have other autonomic nervous system issues too and its all covered including mast cell activation disorder. They are a really friendly bunch and will answer any questions you may have.

If you are on facebook there are loads of groups on there too. A great blog on the subject of dysautonomia is one called Living with Bob.

Any questions please give me a shout hun!

Thanks so much -- you are such a sweetheart!

Hugs
Rach

Originally Posted by southblues (Post 936130)

Mestinon does not raise my blood pressure. Also, I am pretty sure that it actually slows my heart rate down. If it raised my blood pressure, I couldn't use it because I have a terrible time keeping my blood pressure under control.

Originally Posted by rach73 (Post 936150)

Hi Jana,

You need to do the poor mans TTT after about 12 hours fasting including liquids and no mestinon - if you can do that safely!!! That would give you a more accurate result. But as you are taking large doses of mestinon I wouldnt do it without a Drs supervision to be safe.

The weaving is your bodys natural way of keeping the blood from pooling in your legs - quite natural in dysautonomia and EDS.

Wow! I never knew! I just thought I was weaving because my leg muscles were weak from MG. I'll be sure and say something at my next neuro appointment. No, I don't think I can do the poor man's TTT right now. But, thanks for the detailed "how to"!!

I would say your heart rate is on the low side 60 should be the lowest maybe lower if you are an olympic athelete that maybe something you need checked. I know I feel absolutely horrible at 54bpm (lowest ive ever recorded it at). Its weird your heart did not even respond to the change in posture which is 15-20 bpm raise from your resting rate (it then drops back down again very quickly in normal people).

I have ALWAYS thought my heart rate is low. I've had my thyroid checked multiple times. I used to be quite active -- at work, in the house, and in the yard......but, NOTHING to give me an "athlete's" heart rate. :confused: It did ALSO seem odd to me that my heart rate hardly changed. It seemed like a "normal" person's would vary more than mine did. STRANGE!!

But I am not a Dr and this is only stuff I have picked up whilst researching my own illness. I dont want to look as if I am giving medical advice because I am not qualified to do so!

Something is definately going on hun. I would suggest asking to see a cardiologist that knows about dysautonomia. On Dinet they have a list of Drs if that helps.

Hugs
Rach

Originally Posted by AnnieB3 (Post 936280)

Jana, Your BP looks just fine. Not even a sign of over hydration or dehydration.

Green tea might cause more GI issues. So hold off until you've been thoroughly checked out! If it's alkaline, it might do more harm. Always try only one thing at a time or you won't know if it's helping or hurting.

Have you brought the "weaving" up to your neuro? Have you videotaped it? I think a neuro would be the one to run it by first, IMO.

I haven't mentioned it to any doctor! I just thought it was part of MG. It was MUCH more noticeable after my attempt at the tilt test.

With your migraine history . . . have you been looked at for any possible clotting disorders?

I don't know. What tests would have been involved?

You have good doctors, so I'm sure they can help you figure this all out.

:hug:
Annie