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
Quote:
Originally Posted by nemsmom
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
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