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Anybody have Gastroparesis?

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Unread 11-28-2012, 07:25 AM   #11
rach73
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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.

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 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.

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!)

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

I hope this helps

Rach
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Diagnosed with:
Postural Orthostatic Tachycardia Syndrome,Post Prandial Hypotension, Orthostatic Intolerance, Arrythmia, unstable blood pressure, severe autonomic nervous system dysfunction ,Ehlers Danlos Syndrome Type 3,Gastroparesis,IBS,Hidradenitis supprativa
And Myasthenia is still a possible diagnosis depending on which Dr I see.

My blog address is
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Lord, grant me the serenity to acceptThe things I cannot change,The courage to change The things I can,
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When they said,"You're perfectly healthy,
It's All In Your Head."
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Unread 11-28-2012, 11:42 AM   #12
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Originally Posted by AnnieB3 View Post
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
Thanks, Annie! I have NOW had TWO good nights of sleep. Am existing on toast, rice, cheese, and chicken. (With a honey bun in the middle of the day.) My stomach seems to behave as long as I am careful with what I eat. Man, I MISS my veggies! Broccoli was like candy to me.

SOOOOO many people are getting pancreatic cancer, now. When Dad was diagnosed, it was so very rare.

I just made an appointment with my GP. ...he can get me a QUICK appointment with a gastro.

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Unread 11-28-2012, 11:47 AM   #13
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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?
My breathing TANKS when I'm on my back. I suspect it is due to a weakness of my diaphram??? I worry that even IF I'm sedated with twilight sleep and on my back, I won't be able to catch my breath. I really do NOT want to be intubated.

I got aseptic meningitis from my one and only round of IVIG. I was sick for more than a month afterwards. Doc agrees that we do NOT want to repeat that.
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Unread 11-28-2012, 12:01 PM   #14
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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
As always, THANKS, Annie! I'm so glad I posted this question -- I had no idea what wonderful info I would get!
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Unread 11-28-2012, 12:21 PM   #15
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Quote:
Originally Posted by rach73 View Post
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
Oh, Rach, I thought of you when I posted this question. I didn't know if you were still frequenting the forum. SO glad you found this -- your info is extremely helpful!

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Unread 11-28-2012, 02:22 PM   #16
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Yikes!!! Yea been there done that with the aspetic mengigitis.. It is purely a rate thing with me.. though I have gotten it bad once, and then milder a few more times.. it always sets me back, never mind the misery of the pain, fever aches etc!!! It can leave me weaker for sure.. I also get some bad skin rashes from it - again worse with increased rate... They mentioned plasma exchange for me, but man it all makes me nervous!!!
I hear ya about the not wanting to be intubated.. I was freaked out when they almost intubated me.. I barely remember my son being born since they had me on bipap about to intubate.. i was in fear for my life at such a magical moment.. it was completely unexpected... as I thought any weakness or droopy face was just a pregnancy thing prior..
They did have me on my side for the endoscopy/colonoscopy though, which i'm sure is standard... Good luck, Zofran helped me some, though by no means resolved the issue!
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Unread 11-28-2012, 02:34 PM   #17
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They did have me on my side for the endoscopy/colonoscopy though, which i'm sure is standard...
Oh, this is GOOD to know!! Some things you just can't research on the internet -- first-hand accounts are BEST!

Aseptic meningitis -- worst headache(s) I've ever had! And I have bad migraines.

From what I've heard, MOST people don't have a problem with plasmapheresis (PEX). I was the oddball -- BP bottoming out. The central line was NOT fun -- tubes in your neck and stitches holding the contraption in place. I was soooooo glad to get that thing removed! But, if given a choice, in an emergency I'd rather do PEX than IVIG. The aching, rashes, and general discomfort after IVIG -- like having the flu for a month!
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Unread 11-28-2012, 02:46 PM   #18
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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..
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Unread 11-28-2012, 03:29 PM   #19
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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..
Oh, yes, I had rashes. The palms of my hands were AWFUL! I was clawing, too! I also got a rash on my chest and something that looked like Rosacea on my face. The ER tried demerol and phenergan for my headache the day after my infusion -- it didn't help much and the ER doc (against my neuro's orders) gave me Morphine. NAUSEA!! The smart nurse stopped the "push" when I said I was sick to my stomach -- later learned that Morphine could have tanked my breathing. My headache finally dulled enough that they sent me home (after doing a CT scan). I took Fioricet almost around the clock for the next couple of weeks.

Funny thing -- after menopause my migraines stopped. IVIG seems to have brought them back -- and even worse than before. I think the aseptic meningitis may have "fried" something in my brain.

Yes, I only use Mestinon. As long as I am CAREFUL about everything else, the Mesty has kept me going. Can't use immune suppressants due to cancer running in my family.
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Unread 11-28-2012, 03:56 PM   #20
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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!
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