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Old 02-04-2009, 04:55 PM #1
nemsmom nemsmom is offline
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Join Date: Feb 2009
Location: Oregon Coast
Posts: 503
15 yr Member
nemsmom nemsmom is offline
Member
 
Join Date: Feb 2009
Location: Oregon Coast
Posts: 503
15 yr Member
Default MS, POTS and possibly MG.

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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