How long is too long?
 

How long is too long before seeing a neurologist about my positive test results (Achr mod ab 85- others negative). My PCP who ordered the tests admitted that she isn't sure how to interpret the data since only one Ab was positive. I called the neuro who saw me a few months ago (working up for MS) and he is out this week and most of next week due to the holiday. I'm sure if I call around the wait will be even longer for a new patient. My PCP is faxing my lab results to the neuro, and he will look at them when he comes in on Monday to see when he wants to "fit me in".

I just want someone to tell me I either DO have MG, or I MAY have MG and more tests are needed. Was anyone out there diagnosed on blood work alone? I feel like my medicine I took this morning is "stuck" and I have to work to swallow today, but I really don't trust myself right now after having several doctors tell me I'm "fine". Maybe I'm just having a bit of an anxiety attack? How will I know the difference??

Thanks all for putting up with a slightly freaking out new friend :)
Barb

Barb, Do you try to figure out the end of a movie when you start to watch it? ;)

The main concern is whether you can swallow, breathe, or move well. If any of those become worse, you need to dial 911.

Mestinon syrup is sometimes better for those with swallowing issues. And you can titrate it more easily.

If you said what area you live in, someone might be able to direct you to a MG expert!

I think you should try to relax as much as possible. But that's only my opinion after having MG for 56 years.

I've read just about everything I could find in libraries/books and the Internet on modulating antibodies and MG (in general). Unless you have autoimmune liver disease (have you had a metabolic panel done?), I doubt that you don't have MG. There are cases where someone only has a thymoma causing antibodies and when it's removed, the MG goes away—but that's rare. There are some LEMS patients who have positive MG antibodies, too.

Also, some antibodies are tissue bound and some are circulating antibodies. Maybe the binding aren't circulating or maybe you are one of us who has ONLY modulating ABs. The only reason that doctor doesn't know what to make of that is because she's not a MG expert. Most MG experts get this simple fact.

This waiting around for doctors to deem you worthy enough to have a diagnosis is rather silly. But what else can you do? You either seek out a MG expert or wait until this neuro finds time for you.

Until then, live your life as best you can. I know that it's overwhelming to stare down a disease and you probably have loads of questions (write them down!). But maybe you need this time to sort it all out and figure out what having MG means to your everyday life.

Again, if you get worse, don't hesitate going to the ER.

Do you talk a lot? If so, those swallowing muscles will just keep getting worse. The more you use weak muscles, the less you can use them! ;)

Annie

http://www.clinchem.org/content/56/6/1028.full

http://www.mayomedicallaboratories.c...vis/7b-15.html

Read the section on modulating antibodies. Modulating ABs also reflect blocking antibodies (a test they don't do anymore), although I believe it's still available. They also changed the ranges for the modulating antibody about two years ago, making it even harder for "borderline" numbers to confirm MG (how sweet of them).

Barb in my opinion you DO have MG.
Mike

Thanks Again!
 

Annie and Mike,
Thank you for your responses and honesty. I have come to terms with very likely having MG; now I would like to move on to treatment as quickly as I can. With having 4 kids and being in a Master's Program, I need all the energy I can get!

I have read that many people with MG can lead normal or near normal lives. Has that been your experience? Is MG a fluctuating type disease where you are feeling good for a while, then you may have a relapse or are you pretty much normal after finding what treatment works for you?

One question about swallowing and breathing. I am definitely having more trouble with those two as the days go on, but not enough that I feel like I need to seek treatment in the ER. Example, my breathing doesn't feel like I have an elephant on my chest- more like a puppy :) In other words, I look fine, and I'm breathing OK, but I can feel a change. Same with swallowing, I can eat ok, but I have to stop eating earlier than normal. Two things that give me trouble- bread and soda. Do you guys find that you have trouble swallowing some things more than others?

Barb

I can't speak for others, but my life is fairly limited by MG. I can only use Mestinon, however.

There are many people who still work with MG. I would venture to say that most of them are on some kind of drug regimen. There really isn't an answer to your question as it relates to you and MG. It all depends upon what drugs work, what level of energy you expend daily, and how stable or not your MG remains.

Soda can go up into your nose! Bubbles tend to rise, so if you have trouble swallowing food and liquids, it might not be a good thing for you. It's really fun when water from a shower magically makes its way up through the nose.

I can't tell you what foods you'll have a hard time with, because what is okay for one person might not be with another. I can even choke on spit when I've talked too much or am really wiped out.

You might be "fine" while awake, but how are you while you're sleeping?! I hope you will see a pulmonologist once you're officially diagnosed.

When I had my crisis in 2005, I went to urgent care because I was much weaker. I hadn't realized the degree of weakness—the doctor said that I couldn't squeeze his fingers at all and I thought I had been doing it quite strongly. So you can get weaker relatively slowly and not notice it, while if you become suddenly weak you will.

Don't expect to become superwoman! Mestinon is only a helper drug and does nothing for the immune system (even though a couple of studies say that it does). The other drugs have varying side effects. You probably need to reevaluate what you can or can't do at some point.

I just hope you can see a doctor face to face to get questions answered! Writing all the questions down will help both you and your neuro.

Only you can decide what you can handle or not.

Annie

I have to agree with Annie, and you have to remember that this disease is so variable, that each person may well have a different experience.

I too have read often that Well I would have to challenge that.

I am still without a dx, though it is 95% certain that I have some form of Myasthenia.
Whilst Mestinon, at the right level, gives me back an almost normal level of energy, having to plan the rest of your life in 4 hour chunks, is hardly Normal.

Also it has taken me 11 months before I could get meds. In those 11 months I have been able to do zero exercise. As a result I am now 10 kilos heavier than I was and out of condition. Working within the confines of MG, it is likely to take me a couple of years to get back to where I was... again hardly normal.

It will be different for everyone, if only your eyes or swallowing have been affected, then it may be easier, but as Annie said

I work full time and I still ride my horse. I am not very good at riding the horse anymore; I have a terrible time getting on and off of her. I still have fun at it even if I am in pain afterwards.

I am not quite what I used to be, but then again, who is at my age? I am so much better for being on cellcept and mestinon that I am able to function even if I do walk funny and occasionally lose my voice.

I am not cured, but the medications help a lot.