Hi all! I am new to this forum, actually new to this whole blogging thing in general, as I have never really had anything to talk about before. It is kinda crazy how fast things can change. Which brings me to why I am here, I am in the process of getting diagnosed with MG. The symptoms I went to see the neuro for, came on in a matter a few days, have little to do with MG and included:
numbness/tingling/pain in my hands/feet (much worse in hands)
urinary retention/hesitancy
Swelling that would stay pitted for several minutes with just a finger press.
Increased brain fog/disturbed vision
Weakness/unsteady gait
Have had many, many other symptoms over the years, but these were the new problem
Obviously we did a bunch of tests and lab work and ended up with some strange results:
Acetylcholine receptors - positive for blocking and modulating.
ANA by elisa - positive
ANA by IFA - 1:40 negative or faintly positive
ds-DNA - 1:80 (positive is >1:10)
Sed rate - 18 normal (usually high for me)
MRI was normal
Lets just say my neuro was quite surprised by the results, not to mention a little worried (which makes two of us)! She is hoping I don't have a duo diagnosis as some of the labs are also strongly pointing to lupus. She isn't saying that I have either condition, as yet (Apparently she consideres my med list to be fairly extensive and feels it MAY be causing a false positive). Now I have to have single fiber EMG and chest ct. Also have been referred to rheumie, prolly for a whole lot more testing.
I do have some questions and hope someone might be able to tackle one or more for me.
1. have you heard of someone with false positive antibodies?
2. does anybody have both lupus and MG? Can you tell me a bit about it?
3. Anybody from the kansas city/topeka area that has any input on the neuro's in the area or the local hospitals, speficially KU Med or Research?
4. For those of you with generalized MG, what does mild respiratory symptoms feel like? I have times when I cannot lie on my back because it feels like I cannot get a full breath or my throat feels heavy, sound familiar to anyone?
5. Anybody know anything about MG and MAO inhibitors? I am on emsam, a patch form of this med and am concerned.

I know most some of these questions might not be answerable, but any attempts would be greatly appreciated. I am sure more questions will come up, but that is all I can thing of for now. I am sorry for the length of this post, but I am having a hard time sorting things out.

Hi,

Yes, it is possible to have very high antibody levels and zero MG symptoms. You seem to have a fair number of MG type symptoms, so the test is very likely accurate. I must say,though, you have quite a few symptoms that don't sound like MG, with labs to back those up, so it looks like a dual diagnosis is a strong possibilty. I know of more than one person with MG and lupus, and know of several others who have MG along with one or more other autoimmune diseases.

However, you are in luck. Dr Richard Barohn at KU is EXCELLENT. Probably one of the top 10 (if not top 5) MG docs in the nation. He diagnosed me 10 years ago before moving to Kansas. You may have to wait a bit to get into him, but believe me, he's worth it.

Yes, you are describing some respiratory symptoms of MG. I will wake up choking on saliva at times.

I don't think MG and MAO inhibitors are as much of an issue until you begin to take meds for the MG. Then there *may* be a problem, but that's why you need a good, knowledgeable doctor working for you.

Good luck,

Missy

Hi. I'm sorry you are having to deal with so much at once. My first impression when I read your post was that if you have lupus, you need to be seen by a rheumatologist to be diagnosed and treated. My second thought was that you should also see a pulmonologist to get full pulmonary function tests done, including MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure). MIP and MEP are specific to neuromuscular weakness and can be a very good indication of how you are doing. So it's good to have a very good pulmonologist and have baseline tests done.

Yes, you can have lupus and MG. I have known a few people who do. It's not fair but it happens! Both diseases are manageable but you need VERY good doctors, especially a rheumie and neuro who are willing to talk back and forth about your care. Missy is right, Dr. Barohn is one of the best. If you can get in to see him, then do!!! And you want the best if you do have two autoimmune diseases.

I volunteered to the local lupus foundation for ten years so I know a lot about it. It's not a very fun disease. Don't be scared though! How it affects you can be different than how it affects others. And some of the drugs used for lupus are used for MG too. Once you get an actual diagnosis, just do LOTS of reading.

There can be false positive AChR antibody tests but they don't happen very often. I would bet that Dr. Barohn would redo them just to be sure. And probably do a Single Fiber EMG as well.

Your neuro should know about MG and MAO's. If not, Dr. Barohn definitely will. It's just that some drugs may be relatively contraindicated to take while taking MAO's. Don't worry! A good neuro will help you with all this.

As far as the breathing goes, I would recommend two things. One, get a peak flow meter (or a pulmonologist can give you one for free). It's not as accurate as doing breathing tests in an office but can give you an idea how you are breathing OUT. Two, if you can afford it, you may want to consider (after you are diagnosed with MG) getting a pulse oximeter. I've had one for four years now and it has been invaluable. It shows what your oxygenation is. I use it to see how I'm doing while exercising. It came in handy in 2005 when I was doing very badly and had an MG crisis. My stats were 94% and were not recovering to their usual 98%. I have a Nonin Sportstat, which is very good.

If you are having trouble breathing in, you should probably see someone right away. Because you are new to all this, you probably can't tell yet what is a mild, moderate or severe problem yet. Or maybe you can! It's better to check with a pulmonologist though to know for sure. My pulmy has standing orders for when I am doing worse to have tests done.

And not to add to your doctor load or anything but if you haven't already seen a cardiologist, it's not a bad idea. Lupus, if you have that, can affect the heart. So can MG due to breathing issues. And if you have SIADH (syndrome of inappropriate antidiuretic hormone), then you'll probably need an endocrinologist too!!! Sorry, but lupus patients often have to have a variety of doctors since lupus affects a variety of different systems in the body. It just sounds like you are retaining fluids and that really is in the realm of endocrinologists.

I hope that helps somewhat. I guess you can't really do anything until you know for sure what is going on. Get those good doctors!!! That will help tremendously. And then learn as much as you can. But don't worry. There are lots of treatment options now and other ways you can help yourself (like getting enough sleep!). And when it gets warm outside, stay the heck out of the sun. Sun makes lupus worse and heat makes MG worse.

Annie

Hey, thank you for the information. It is very helpful. I especially appreciate the heads up on Dr. Barohn. His profile is pretty impressive. The best thing is that he is even on my insurance! YEA! Something going right. So next step is trying to get an appointment. Guess I will make one now and by the time I actually see him, the majority of tests might be done. Well, it at least works in my head. Right now I am seeing Dr. Kimberly Cochran. Anybody heard anything about her?
Also, about the pulmonary doc... I will keep it in mind when/if I get diagnosed. I will also check with my allergist and see how my peak flows have been in the past and see if anything needs to be investigated further.
As for the cardiologist...well that was on my list if no one could explain to me the edema. Have had epioses of chest pain in the past. Nothing was ever really done though and symptoms mostly resolved. EKG and cardiac enzymes were fine. No echo done yet.
I see a rhemie tomorrow. I hear he isn't the nicest doc, but that he is really smart. But that is what i need right now, SMARTS. I can choose a nice one later.