New here, going thru dx process
 

Hello,
I am a 36yo female currently being tested by a neurologist for what he identified as MG. Prior to that I had not heard of the disease, but am quickly learning much. I'm 5'7 and 135 lbs, and have always been athletic. That all changed last summer when my routine workouts became strangely a LOT harder.

So far my EMG has been abnormal, as were certain things on the full neurological examination. My primary symptoms are weakness, chest pain, and blurred vision with occasional eye pain.

Which leads me here to ask about the chest pain.

Prior to seeing a neurologist, a cardiologist did a full workup to check my heart. The EKGs were normal, the echo was normal, but I couldn't finish the stress test because my legs got tired too soon. That was about four months ago, and the chest pain continues.

It is in a very specific place, never moving. Near the sternum/breastbone, just below the collarbone, on the left side near the center. It seems like the neurologist has been ignoring that symptom so far, but man it is uncomfortable. I feel it on average 3-5 times in a week.

I see my neurologist in four weeks, and a new GP next week (I didn't have a primary care provider yet). Is it wrong of me to not want to wait a month to ask if the chest pain is possibly a growth on my thymus gland?

Thanks to all in advance. Nice to meet you : )

Wow- Nice to meet you as well, restorativepose! Your chest pains intrigue me the most about this..as I have them as well.

Have then done a CT scan to see if your thymus is englarged/normal?- That would be good to know...

But as far as the chest pains, I too, get chest pains in exact location your talking about.. I have also had a full cardiac workup and at the time could manage the stress test and that was normal as well.

I've never really been able to attribute anything to them...so I've learned to just ignore them, which is difficult when you don't know what it is...

Im confused, was your EMG abnormal or normal? And, have you had the blood tests/ or the new tensilon test?


Oh, by the way my name is Tyson- didnt really introduce myself in the beginning.. hah.
I have never had the antibodies in my blood for MG, but I was diagnosed through an SFEMG, continue to be. But, never been able to pinpoint an antibody and I have been to many docs.
I had a thymectomy in the beginning, and have tried several immunosuppresants to go along with it. Finally, after 3 years of attempting to find treatments that work, I am almost symptom free (knock on wood). I take prednisone, imuran, prograf, and IVIG every five weeks at the moment! Wohoooo


I hope your diagnosis gets more definitive, or you find out whats wrong soon.

Feel free to ask as many questions as you want/neeed!


Tyson

I have dealt with the chest pain since '94 although it seemed to have started after surgery for Thymoma. Seems to be nothing serious use an oddity which is hard to ignore. Your doctor should send you for a CT scan just to make sure everything on the inside is fine. Please keep in mind that with many of us the tests come back negative but were still diagnosed with MG.
Wish you the best.
Al

Good morning friends,
Thanks for the thoughtful replies. It's good to know when you're amongst friends.

Yes the bloodwork test for MG... I left that out of my initial post. It came back negative, so if MG is to blame I would be one of the 20% "seronegative" (right word?) people with it.

A CT scan hasn't been done to look at the thymus. I called the neuro's nurse this morning to ask about the chest pain possibly being related to the thymus. She was going to forward my question to the doc.

But on the same call, she said that just last night the doc had put in an order for me to have an MRI... Something he'd declined (for me) initially. My eye dr was the one who became concerned based on what she was observing, and cared enough to send the neuro a letter stating her suggestion of an MRI.

Sometimes I wonder if chest pain isn't our body's way of telling us to STOP!!!! whatever we are doing and take a break....

My guess is that the reason you couldn't finish the stress test (and your legs were weak) is because you do have MG, not because there is anything wrong with your heart. It's probably the muscles on your chest WALL that are hurting, which would make sense, as MG affects skeletal muscles.

MG is probably hardest on the folks who are the most active - having to give up something that they love so much is quite difficult. You are going to have to allow yourself to fully grieve that loss (and you will probably find yourself pushing the limits in the meantime!).

It is vitally important that you learn as much as you can about recognizing the physical "signs" that your body is giving you - if a person with MG overdoes it and uses up all of the "juice" that allows the skeletal muscles to work, they will find themselves in a crisis situation from which they may not be able to recover.

If you use up all of the acetylcholine in your muscles, they will cease to function. The muscles that allow your lungs to expand and contract are one set of those muscles which are affected by MG. If you use up all of the ACh and they can't work, the ONLY thing that will save you is mechanical ventilation (a ventilator), and if you can't get to one in time, your brain will not get enough oxygen - and that's when the REAL trouble starts.

I'm not trying to scare you, but it is vitally important that someone like yourself - who is normally very physically active - understand that for a person with MG, too much exercise literally CAN kill you. Trying to push through to the "next level" isn't an option - the next level is the ICU..... :eek:

It's going to take time to adjust mentally to this new reality, and it's going to take time for you to "allow" yourself to take things easy. It's hard when we LOOK just fine to explain to people that we get tired from just a tiny amount of exertion. But you have to learn to listen to what your body is telling you, because those around you aren't going to be able to tell that things are getting bad just by looking at you.

Give yourself permission to be - for lack of a better word - lazy. :winky:

The good thing is that you have a NAME for what is causing your exhaustion - doctors always tell us, "You don't want to have this." Well, duh.... :rolleyes:

They don't understand that it is a RELIEF to know that we aren't imagining things, and that once we have a NAME for what is happening, we have a starting place. Yeah, this disease sucks big time, but at least we have a chance to talk to other people who can tell us what to expect and whether a particular symptom is "normal" or not. If you don't know what is wrong with you because it doesn't have a name, you're pretty much at sea - you can't learn more about it, because you don't know what "it" is.

The good news is that MG is not a fatal disease (as long as you pay attention to your body) - it is a chronic, manageable disease that is relatively pain-free. We don't lose brain function (although at night, we may find ourselves not thinking as clearly). Our bodies and our organs function "normally". That's not to say that it isn't a FRUSTRATING disease, but that's mostly because our brains are telling us that we should be out doing stuff, and our bodies tell us, "Hold on there...."

We're here to help you through - this is a GREAT bunch of folks, and I have certainly learned a lot in the short time since my diagnosis. Don't be afraid to ask questions - I guarantee you, there is always SOMEONE on here who can help you, no matter what you may be experiencing! :hug:

Many of us - especially if the initial diagnosis is made because of "ocular" suspicions - will test negative for MG.

The MRI is done to rule out a brain tumor, the CT scan is done to look for a possible thymoma. An MG diagnosis in the absence of positive bloodwork is a diagnosis of "elimination" - a doctor will rule out other things first.

If those tests come back negative, the muscle tests are performed. You indicated that your muscle tests came back suggesting there might be a problem, so that's another data point for your doctor.

If your MRI and CT results come back negative, the next thing that you can ask your doctor to do is a Mestinon trial. If you don't have MG, you will NOT be able to tolerate even a small dosage of Mestinon. If you are able to tolerate it, chances are that MG is what you are looking at.

You don't want to be on Mestinon when these other tests are being run, as it can skew the results of those tests.

While you are waiting for the results to come back, PLEASE treat yourself as if you DO have a positive diagnosis - by that, I mean take it easy. Don't over-exert yourself, and don't try to "exercise" yourself into feeling better (if you have MG, that's DEFINITELY not gonna work).

Allow yourself to rest and relax - it really is the best thing for your body. Let your family and friends know your limitations, and don't be afraid to ask for help if you need it.

Like I said, we are here to help you navigate your way through this - ask away (or complain!). And always remember - there are no "stupid" questions.... :hug:

I'll just echo what these guys said. Since MG gets worse with repetitive (treadmill test) or sustained (holding an object) activity, your legs were simply getting weaker due to repetitive activity.

Don't ever ignore chest pain. It could be costochondritis or other inflammation, narrowing of the arteries, which don't always show up unless you do a nuclear scan, a blood clot, hole in heart, electrolyte imbalance, etc. A LOT of things can cause chest pain. A good doctor can figure that out.

Again, make sure they check your oximetry. They should do it while you are walking around too. In MG, the first thing that happens when our oxygenation goes lower due to weak chest wall muscles is that our heart beats harder to get us more oxygen. So, your pulse will go higher! Then, if you sit down with that oximeter on, your pulse will come down but then so will your O2 saturation! Checking oximetery for an MG is like an art form because we get worse when we DO something. ;)

And, yeah, you could have a thymic tumor. Or thymic hyperplasia, which just means it's bigger than what it should be for your age.

I hope you get solid answers soon. In the meantime, don't overdo or push! Like Teresa said, it's quite dangerous for an MGer to do that.

Annie

Chest pain
 

Restorative,

I felt exactly like you did with the chest discomfort! In the year and a half before I was diagnosed with MG, I went to see a cardiologist twice for EKG's and all was OK. I thought I needed Xanax to calm down as it felt like a very mild panic attack. It usually happened in the morning when I woke up and wasn't doing anything strenuous. Now, since I had a thymectomy last month, these syptoms have disappeared! I didn't have a thymoma, but my thymus was slightly enlarged. Just something else to keep in mind. Our body seems to know when something is off.

Texas that's amazing, thank you for sharing. I have an MRI next week and although it's of my brain and cervical spine, I asked the doc if he would include the thymus in the imaging. I tell ya, my gut tells me it's just GOT to be related to that.

It and MG makes too much sense now... droopy eyelids, blurred vision after much eye use, weakness symptoms increase with physical activity, chest pain/pressure near the thymus, feel like a new person after rest, all of that.

Even if those tests come back negative, keep on insisting on the other tests. Too many doctors will stop if one or two tests are negative - they don't understand HOW we feel, and we look "just fine" on the outside.

If everything comes back negative, INSIST that you be allowed to do a Mestinon "trial" - for many of us with no "positive" indicators, being able to tolerate Mestinon is an almost foolproof "diagnosis".

It's important to know if you have MG; otherwise, you may feel "guilty" for not doing more around the house, and you could put yourself in a crisis situation. It's vitally important that ER staff know if a patient does have MG; otherwise, "treatment" could end up going south fast (there are some medications that are absolute no-nos for people with MG)....

Dear RestorativePose-

I am a 25 yo F, and was also recently diagnosed (February 2012), although I have been told that I have had the disease for the last 15 years because my double vision and droopy eyelid (hallmarks of MG) started when I was 10 and was just never picked up my by eye doctor (he even did surgery to correct the double vision!) I have an abnormal EMG, but the first round of blood tests done by my 1st neurologist including (I forget the specific name) came back negative as did the genetic markers. I am waiting for the antiMusk results. If that comes back negative there is one more to do- make sure they test you for all 3- I wasn't even aware there were 3 tests to do until my bloodwork came back negative and I was told the same 20% statistic- I have been told it is important because some kinds of treatment are less effective with certain antibody types; and who wants to waste more time.

In December I was very run down in my residency and working as a waitress. I was also the primary caregiver to my mother who has another auto-immune disease and was getting chemo. I am very active and always skipped the elevator and instead would walk up the 5 flights of stairs to my office and then suddenly would be exhausted by the 2nd flight. I too had extremely odd right sided chest pain and couldn't walk more than 20 feet without coughing and needing to sit down. I would start the day off great and by 10 am have no voice and no energy. I figured something was wrong with my right lung as my left lung had freakishly collapsed when I was 20 and I had been warned that the right one would collapse at some point in my life. IMy anti-x-Ray internist was convinced it was bronchitis/pneumonia and put me on medications that flaired up the then un-diagnosed MG. I would up in the ER 9 times- and 9 times was told the x-rays were clear and it was asthma- although the treatments did nothing but make me cough more and make me even weaker.

Finally in February someone called a neuro consult and the neurologist walked in the room and instantly knew I had MG because of the history of double vision and she could see the ptosis. As for the chest pain- the CT showed that my Thalmus is normal but after all my x-rays films were reviewed again by a different hospital it appeared that I had 2 broken ribs the entire time, most likely from all the coughing.

Through all of this I saw quite a few doctors who were convinced that there was nothing was wrong with me. The pulmonologist still swears that I don't have MG but rather this is anxiety (I have since taken him off my case), no matter how many other physicians call and write to him telling him that I do in fact have it. There was one point where I begged my family not to take me to the ER when I couldn't swallow because I was afraid they would call a psych consult.

The bottom line is that I have learned to trust my body. It's never wrong. In hindsight I remember times as a child where I would tell my mother that I felt "mushy". That feeling is the same one I have now on a bad day. I can't take the 5 flights up and down four times a day like I used to and don't think I will ever be able to but I haven't cancelled my gym membership either; I'm hopeful my doctor will eventually let me at least walk on the treadmill.

I think you also have to find a doctor who trusts your instincts- you will know when a treatment is working and when it isn't- the first doctor I saw thought Mestonin was the be all and end all; when I wasn't getting better he kept increasing the dose and frequency. I wound up with Mestonintoxicity and back into crisis. I found a wonderful neurologist who decreased the dose and put me on IVIG. When I am not right all I have to say is "I don't feel like me" and she knows something isn't right she doesn't waste 20 minutes of my energy grilling me with non-sense questions like "are you taking the Mestonin" . She decides how to fix the problem and quickly. So don't be afraid to switch if your not comfortable- there are so many people here I'm sure someone will be happy to give you a regional recommendation.

- Nicole
Hope some of my long rambling helped!!