Hi everyone,

I'm new here so I will give a little history to let you know why I'm here. I will try and keep it as brief as possible....

Okay here it goes.
First off I am now 24 years old.


In 2004 I had gone to see my now in-laws for the day with my now hubby. I was just so tired I couldn't stay awake, I slept through the whole day. Which is not like me to sleep around people I don't really know (it was only the second time of meeting them).

Anyway on the drive home I slept. We stopped for hubby to go into a store, I woke up just long enough for him to tell me he was going in. When we got home he had to help me to be, I kind of walked but really just moved my feet a little, I was just so weak.

By the time we got to the bed I was too weak to move, talk or open my eyes. He checked my blood pressure and my blood sugar, both of which were fine, and decided I was going to the ER. They did an EKG (normal) and some lab work (normal) and told me it wasn't life threatening go see my primary.

Three days later I saw my primary and found out I was five weeks pregnant with my daughter. So finding out what caused this got put on the back burner. After delivering my daughter my blood pressure dropped to 52 over 24 for no apparent reason.

I continued to have weak spells, but now they were different. I start to get tired and feel weak. Then I feel like I HAVE to lay down. Once I lay down I get so weak I can't move or talk and it feels like it takes all my strength to breath. These last anywhere from 15 minutes to two hours and it takes about an hour from when I first start to come out of it until it is done, but I'm still more tired for the rest of the day.

In the process of searching for the cause of these I have had four MRI's (that's how we discovered the MS), a tilt table test (that's how we discovered POTS), countless labs, several ultra sounds for pelvic pain, an exercise test, a nerve conduction study and an EMG.

I have been to five different primary care doctors, three different neurologists, four different gynecologists, and endocrinologist, a cardiologist and now a Neuro-muscular neurologist.

I took an ambulance ride followed by a five day hospital stay in June 2008 and I still don't have an answer to my weak spells. They seem to come when I over do it or get too hot. They also seem to be working on a six month cycle, I start to get a little better then get hit hard at the end of six months. They also seem to be worse for about a week before the beginning of my menstrual cycle.

The EMG and nerve conduction study were normal but the labs that were done with the exercise test were abnormal so now they want a muscle biopsy.

I guess what I'm asking if this sounds like MG to you. Is it possible that that is still what they are looking for. MG was suggested a few months ago but it has been a battle to get in and get the tests done. I'm not looking forward to the muscle biopsy, but with five years now of looking for an answer I am willing to do it as long as they can give me an answer.

Thanks for any advise or support, sorry this wasn't short by any means.

Kristie

Hey Kristie! I am so sorry to hear you've been through so much! It is so
frustrating!

I am still a "newbie" - having only been diagnosed March 6th and having my thymus removed on April 22nd, but I can tell you that extreme fatigue was my first "real" symptom. I was always tired! Always!

Then my voice started to become "nasally", followed by all the MG symptoms, so I guess I have classic MG.

I too have to lie down immediately - immediately and rest. It really irritates me, as I was always so active a while back.........

Unfortunately, to me at least, it does sound like you have MG symptoms. Again, I'm still a "newbie", but you do sound a lot like I did. With lots of meds, I am somewhat able to resume my old life, though there are days when all I can do is lie around and sleep.

I also hve very low blood pressure, though I have no idea why. My usual in the ICU was 70/40. The nurses woke me up to check up on me.

The thing you CAN'T ignore are the problems breathing! You really, really cannot ignore it!If you have that problem again, please call 911 or have a preset call to your hubby,mom, whoever to make sure they will call for you. You do not want to be intubated. It is not fun!

There are a lot of really great, smart people on this site that have dealt with this disease a lot longer than I, and should be able to give you really great advise!

Until then, hang in there and remember to call if you can't breathe!

Erin

Thank you Erin,

It is so good to hear from someone dealing with this.

When the doctor first suggested I went and did a lot of research online. I can't just let them say they think it's this and run all of their tests anymore. If they think it's one thing I want to see if I agree before they get to do all of their testing.

Anyway, when I researched it, it sounds like the thing that fits better than anything else as an answer for these weak spells.

I'm sure it's not fun to have (neither is MS or POTS, but really what disease is) and really isn't a good thing to be diagnosed with but at least if I get diagnosed I can know what it is and how to deal with it.

As far as the breathing goes, I have been on pulse-ox monitors while I was having weak spells (during the five day hospital stay) and there was only one time that a nurse noticed something about my breathing. She came in the room in the middle of the night when I was having a weak spell and kind of shook me and started listening to my lungs and kind of yelling to me to take deep breaths.

After that I heard her comment to someone else that I wasn't hardly moving any air. I have only felt that way one other time. Other than that I can breath, it just takes a lot of energy. The doctors keep telling me that my oxygen level is fine and I'm breathing just fine.

I had an exercise test two weeks ago where they monitored my heart and breathing while I pushed myself exercising to the point I thought my legs were going to give out and I was going to fly off the treadmill. They also measured my lung capacity, and said it was good. But the blood they drew before and after that test is what showed the abnormality and why they want a muscle biopsy.

Sorry that got long again, it's just so nice to be able to talk to someone who understands! I'm so sorry that you have MG but I'm glad you're here for me to talk to. Thank you, thank you, thank you!

Kristie

I know it's hard. I am so sorry. It will get better. It really will.

I remember how hard it was to breathe - before I was diagnosed - it was so scary. My hubby and I were heading up to Huntsville to see my Grandparents and I was really having a hard time, but I just knew once I saw my Grandma it would be OK. Looking back, I should have headed to the closest ER, but @ that point I had no idea how sick I was..........

MG does stink but it could be much worse. MS scares the heck out of me. So does the big C! At least for MG, there is a strong chance for lifelong remission. Just think of it! Lifelong! One of the ladies in my support group had her thymus out and has been in remission ever since - 10-11 yrs!

It does happen! Plus, MG does not lessen your life span!

I am on a ton of pills and have gained a lot of weight, but now I can eat, walk, breathe!

You may want to ask about IV IG or the plasma exchange once you are diagnosed. I know for me IV IG is GREAT! It makes me feel like a million bucks! I'm in this week for a 5 day round of it, and just know that this weekend is going to be great!!!!!!

Can't wait to hear from you again!

Erin

Sorry I didn't respond earlier but it has been a rough day. I have been weak all day.

I have barely eaten today because for most of the day I have been too weak to chew. I really hope tomorrows better, I have to be able to take care of my four year old daughter and two year old son.

I'm sure things will get better when we know what it is and can start doing something about it. Only eight more days till my muscle biopsy. I hate that I have to wait that long. Then I don't get the results until March 17th.

MS doesn't shorten your life span either, and they are coming far with the advances. It does make things hard, I think my memory and other cognitive issues are the hardest for me as far as that goes.

I take about 13 pills every morning, two-four in the evening and an injection three times a week. But as long as it helps I'm happy to do it. Only cause I have an auto injector and don't have to see the needle puncture the skin other wise I would be sick to my stomach.

One Neurologist wanted to do Plasmapheresis or IV IG back in December as a treatment for my MS flair because I can't do steroids (I had a bad reaction) but they didn't because it would mess up my testing for MG. So once we figure this all out we may be back to that idea. I'm glad to hear it helps so much, that may sway my decision.

As far as the breathing issues go, I have been on monitors while having the weak spells and feeling that way and my O2 sat never drops. But lately when I get my weak spells or I'm weak, if I don't focus on my breathing and try to go to sleep I will wake up feeling like I'm not breathing. Then if I focus on my breathing I can get it to where it feels like I'm breathing enough to sustain myself but it's still a little hard.

I have told the doctors this (I can't remember if I told my Neuro-Muscular Neurologist who is testing me for MG) and they don't seem concerned since my O2 sat never dropped while being monitored. Do you think I should be more concerned? It's scary but I don't know what else to do.

Thanks again for being here to talk.

Talk to you soon.

Kristie

oxygen level can be good, has nothing to do with breathing problems when the MG attacks the lungs.Do you have a BI Pap Machine? Do not ignor any breathing problems

I haven't heard of a BI Pap machine, I will look into that.

So the fact that my oxygen has never dropped more than two points doesn't matter? My only problem with getting help with breathing is that when I have the problem my whole body is so weak I can't communicate, with anyone, or move. I just don't know what to do here.

I have a muscle biopsy on Friday they are hoping to find out exactly what is happening. I had an exercise test a few weeks ago that showed a possible myopathy in the blood work so they are doing the muscle biopsy to find out which one.

They are thinking I either have Myasthenia Gravis or Periodic Paralysis. I just want to know what's happening. I have had weak spells every day for over a week and a half now, usually I only get a few a month plus just no energy.

In my most recent weak spells I have noticed that if I lay down to rest and just try to sleep it off or think of something else I will have a noise or something startle me and feel like I have not really been breathing. As long as I focus on breathing I can breath well enough to keep me alive but it's still a struggle. I don't know if this makes sense I'm having a hard time thinking tonight, happens all the time for me but it's worse when I'm tired.

Sorry this is so long, I just feel like I might be close to an answer and the people here seem to be able to relate to what I'm going through, usually I just get people who think it's depression.

Thanks again for the info and support.

Kristie

Very sorry to hear about your situation....People our age shouldn't have to deal with this sorta stuff...EVER! But like Erin said, it's going to get better!

Bi-pap is a machine that puts positive pressure on your airway, usually you use it when you go to sleep. It's a mask that you wear and it's connected to a machine. It keeps a constant small amount of pressure, it makes breathing somewhat easier.

The issue with the pulse oxygenation...our bodies are amazing. We can compensate for long periods of time..sorta dealing with problems. Usually it's at a cost of expending more energy. Unfortunately what usually happens is you'll crash when your body has used up all of your reserves and exhausted your compensatory mechanisms. As others have said, it's very important you pay attention to any respiratory problems you're having. I would go see your MD as soon as you can to get that under control.

Have you had any antibody tests performed? What about CT scans of your chest? I have been told that most MG in our age grp is caused by leftover thymus tissue..so they should have seen some remnant on your CT if you've had one. My neuro, at one point in time, had told me that myopathies are more likely than MG..at least for us.

Hopefully you don't have MG on top of what you already have, you're dealing with too much as it is! Hang in there and let us know how it goes.

You explained that well. Now if only a doctor could understand that and not think it's all in my head. I do have one doctor who understands and is trying to help. I see her tomorrow for the biopsy. My Hubby is going to help me remember to talk to her about it. I swear when I get in a doctors office my mind goes blank. I can never remember everything I'm supposed to tell them.

I appreciate all the advice I'm getting from all of you. It's so nice to have people who understand and don't think I'm nuts. I'm sure I'm not the only one who's ever been made to feel that way.

Okay I'm rambling, I've got the kids running around and the tv on and I can't focus with that much going on.

Thanks again.

Tomorrow is going to be fine! Hopefully you'll get your questions answered and feel better so soon!

I know it sounds silly, but have your hubby write down your questions. My mind always goes "blank" when I have to see my docs. My GP actually credits my list to my quick MG diagnosis.....After all, they get paid the big bucks to answer all of your questions. They have the time. Make them EARN their money! LOL

Hang in there honey! My thoughts and prayers are with you and your family!

IT WILL get better! You WILL feel better! From what I've read thus far, you are a tough cookie!!!!!!!

Erin