To Trumandem
 

Hi. Welcome to the forum. I noticed your postings in another thread and wanted to respond to some of what you said there. What would you like us to call you?

I think you should go see your primary doctor, if you have one, and get checked for some basic things such as thyroid function and vitamin B12 and vitamin D. When you have MG, you can't really assume that every symptom is from that. A Vitamin B12 deficiency, which I had in 1997-99, makes a person really tired - all day - and it is very bad for the body. Not all doctors think to test for it if someone is tired.

Have you tried to get in to see a neuro-ophthalmologist? They would be the best doctor to go to. I was diagnosed at age 10 with amblyopia/lazy eye, which was not lazy eye since that is permanent if not treated by then. It was ptosis from MG. My eyelids go up and down hourly. ;) That's what happens with MG ptosis (toe-sis). The muscles around the eye get weaker with use and then they weaken and droop. Do yours fluctuate like that?

A lot of older people actually have a LACK of or zero stomach acid, not too much. I hate how doctors don't diagnose that properly. The symptoms of too much and not enough stomach acid can be very similar. And the fact that you were on a protein pump inhibitor for four years is very disturbing. A lack of stomach acid causes a deficiency of a lot of vitamins like B12 and calcium and can cause iron deficiency and a low albumin. I would ask your doctor to check a comprehensive metabolic panel!!! And a complete blood count with ferritin. And, frankly, you probably need to be tested for celiac disease!

You may want to try the Mestinon syrup (the brand name from Valeant and NOT a generic). If you have drug coverage with your health insurance. I don't have stomach acid and the syrup gets absorbed more quickly. This may sound gross but do you ever see tablets come out unchanged out the "other" end? ;) That shows a lack of stomach acid. Mestinon syrup can be titrated so that you can start with a really small dose, like 10 mg., and move up slowly from there.

Be careful with any herbal supplements! What are you taking? There are some foods and drugs which can make MG worse. Don't change your Mestinon dosing without the permission of the prescribing doctor. Too much Mestinon can lead to being too weak and can cause an MG crisis. An MG crisis is where you get very weak, can't move or breathe or swallow well and need to be in a hospital. And in case that doctor didn't say this, you can't start and stop Pred. Pred comes with a LOT of side effects, not the least of which is the ability to shut off your adrenal glands. Why would the glands work when Pred is doing their job for them? So please don't mess with that drug.

You obviously need a neurologist who does give a damn. :cool:

Anyone know of a neuro in his area? Is it South Carolina?

I'm sorry you aren't getting the care you need. Because of your age, doctors often do very little to help. I find that to be utterly unethical and cruel. You need a good neurologist and a primary doctor to follow your care. MG can be managed well but it takes a savvy doctor to do that. As Mike/Pingpongman said, immunotherapy like steroids in the elderly is dangerous. The risk for infection is high. And you know that pneumonia is a leading cause of death for the elderly. ;)

If we can help in any way, please start a new post or add to this one. You need some good care and probably have more questions. I hope you find a good doctor and soon!

Annie

I am taking this a bit at a time: my doctor today and I agreed to stop mestinon until I am thru the symptoms of gastroparesis, which is an old devil of mine. My occular myasthenia was in remission till this week, but I am willing to go back to darkening the house as needed to get rid of the gastric stuff. (The double vision is not present right now.. The worst phase of the occular symptoms was ptosis,, which was about total in the presence of sunlight and which came on overnight.) I definitely have the anitbodies, so I am not questioning the diagnosis. The most ironic thing is that the new neuro had a cancellation today and tried to reach me--but I was at my regular doctor's at that time. I am told I am still toward the front of the list of people needing in in an hurry.

Thanks to what you wrote, I remember my son telling me to get B-12: that had never been an issue because my diet was heavy on meat, eggs, milk, etc. But in deference to son's veganism, I am using some substitutes (the soy milk has B-12 added, and I still eat eggs). So I ordered the sublingual vitamin.

Vitamin D should not be a question: I am outside walking my dog nearly 2 hours every day on the lakefront. And that leads to: tiredness has only been a factor these last 2 weeks.

The herbs are not the more exotic ones; an herbalist is reviewing them for my son.

The myasthenia has not generalized at all; no weak muscles. For my age and gender, I am fairly strong; for 20 years (until 2000) we heated with 2 wood stoves. My daily exercise was cutting, stacking, hauling, and loading the stoves.

The amblyopia has rcently been spcifically pointed out by an opthamological surgeon and my retina specialist. I apparently was needlessly prescribed glasses 70 years ago. In the 90's I got frustrated enough to practice focusing for some years. I did well enough to have my vision pronounced normal even for driver's license purposes. At this time, blurry vision would describe what I have--sort of like the presbyopia I never had.

Will look over posts to me again tomorrow. In the meantime, I live about a mile from Lake Hartwell (long and skinny on the map), west of Clemson. And my name is Harriet.

Cannot keep eyes open with lights on here. Thanks for info and input!

Hi, Harriet. Thanks for letting us know your name. You can't always tell by the forum name. ;)

I'm a bit confused. Why would you have to darken the house to get rid of any gastric issue? Are you sensitive to light?

Gastroparesis would imply that your GI tract does not get food going through it. There are a lot of causes of that, including MG.

It sounds like you might want to be tested for a potential autonomic issue as well as the MG.

I hope you will at least consult a gastroenterologist for the GI tract issues. Neuros can only do so much. And maybe your internist/primary doctor could help with anything else.

You'd be surprised at how little B12 from food is absorbed, especially since you are on a proton pump inhibitor. No wonder your GI tract is messed up. We all NEED stomach acid! It gets the whole GI process going. I get my B12, by the way, at www.iherb.com because of their reduction of cost. I like the Jarrow Formulas brand (5 mg.) of sublingual B12.

It sounds like you are very sensible and have good doctors. I'm sorry that the Mestinon wasn't quite doing it for you.

Does anyone know of any good doctors in her area?

Annie

Annie where does she live. I'm in SC near Charlotte, NC
Mike

Thanks, Mike. From what I can tell, Harriet lives SW of Greenville, off of Hwy. 85. Straight shot SW from Charlotte. ;)

BTW, Harriet, Did you see Annie59's post to you about Vitamin D?

Annie

I don't know much about Greenville area. She could drive up interstate 85 to Charlotte and go to the CMC Als center. I went there several times and saw Dr Brooks. He is highly regarded. He treats a lot of MG patients however he is a Neuro-Muscular doctor. He takes things real slow but his exams are real through.
Mike

I live about 3 hours from Charlotte, 45 min from Raleigh, 55 min from Chapel Hill and a Dr. Howard at Chapel Hill did my testing. He has about 300 patients. Chapel Hill is suppose to be the place for the MG Clinic in North Carolina. He is the only one I know. I don't know if that would be too far for you to drive Harriett. busy

Thanks, guys.

Harriet, I hope you will see the best MG specialist that you can.

Annie

Short, short! I have to hold an eyelid open to read online. My ptosis, except the brief time it appeared when I was first diagnosed, is triggered by sunlight and reflected light. the gastric situation seems to have wiped out my mestinon schedule, and I am starting again at the low dose.; I do not now think the med was aggravating the gastroparesis.The ER did warn me of a potassium deficiency, which apparently produces symptoms somewhat similar to myasthenia. That can be remedied; I found I already had a nearly empty bottle of potassium, so one doctor or the other prescrbed it before. I am hopeful of getting into the new neuro soon; I have been to him before with a muscle problem--he's so good that he at all times has 60 people begging to be called if a cancellation makes an earlier appt. available. Oh--gastric pain was greatly aggravated by saliva and mucus going straight into the stomach; I suppose that was the excessive salivation without the drool. Mucous was an extra added attraction.

Yes--a straight shot to Charlotte. We were spending the afternoon there when my husband had a stroke. I drove up there, with my retarded daughter, for half of every week for 2 months back in 2000. But I have opted out of the drive to Greenville because I needed to use the eye patch. Driving that way on any roads except our back ones scares the living daylights out of me.
Harriet

Lost the answer I wrote--D is one vitamin I can count on having enough of