I posted this on another group so just skip it if you already saw it. But after all that effort in typing it, I'm reposting it to all the groups I belong to!!

I think I've probably had MG for about 2-3 years at least. I just got the
diagnosis a week and a half ago. I had absolutely no idea all these things went
together and I would have never, ever mentioned them to my doctor. See I've had
Chronic Lyme Disease for six years, and my Lyme doc, THANK GOD, happens to be a
neurologist. He has traced my original infection back to about 30 years ago,
which explains a lot of my medical problems in my early 20's. A year ago, he
diagnosed me with Small fiber neuropathy, an autoimmune disease where your small
nerve fibers start dying off. It is caused by Lyme and bartonella, another tick
borne infection. I also have babesiosis, another tick borne disease which is
like malaria. It causes shortness of breath, so I attributed my breathing and
balance issues to that.

The small fiber neuropathy causes me to lose feeling in my fingers and feet, and
I go numb from elbows down and knees down, like they've fallen asleep. I
mistook the weakness in my hands for that. Although I should have realized that
not feeling things and dropping them for that reason is different than not being
able to hold onto anything, or open a jar or even squeeze the toothpaste.

My diseases are like "the perfect storm." I think my MG is very advanced. I'm
scared and cried for days. No disease has ever scared me before. With Lyme, I
have a huge network, many support forums, groups, tons of friends on Facebook,
Facebook pages, with MG all I've found is a few groups like this that are kind
of hard to follow and read.

I have been bedridden for 3 years. I am basically non functional. I can type.
For at least 3 if not more years I have loathed talking on the phone. I thought
it was weird, but I tell everyone it's just too exhausting to talk and email me
instead. My friends label it my "phone aversion." Sometimes I have to whisper
to my husband or just shake my head no and point to my throat that I"m too tired
to talk. It goes along with the feeling that I'm too tired to breathe.

I've often told him, but no one else because I thought I sounded like a
hypochondriac, that I feel too tired to breathe and I wish someone could breathe
for me. It feels exhausting. I wake up at night all the time not breathing. I
wake up choking on my own saliva, and I do that during the day too. OK right
now my arms are too exhausted to write anymore and they are cramping up. OK
back. Someone on a Lyme board told me to tell my doctor how I choke all the
time on water. It was getting so bad people around me were always at the ready
to do the Heimlich. It's like it goes down the wrong pipe. Plus whenever I
take a drink it dribbles down both sides of my mouth like I can't even get it in
right anymore!

I am now on IVIG for the small fiber neuropathy. My choking is better since
I've been on, for three months now. But so much makes sense, my weakness, I get
so out of breath after just a few steps, when I go up stairs I get sharp chest
pains and am totally out of breath and have to immediately lay down.

I have been to the ER and admitted SO many times for chest pain and shortness of
breath it's ridiculous. I've had the million dollar cardiac workup so I trained
myself to ignore it when I can't breathe.

About two months ago I was so weak, I could not make it up the stairs. It is a
bizarre feeling. I stopped halfway and just collapsed. I called for my husband
and while waiting, did everything in my power to summon the strength to crawl up
them but I couldnt'. He helped me up to bed. Now I realize, this must have
been part of MG. I was very sick at the time, I had a mild case of meningitis
(not as severe as the first) and had refused to spend the night in the hospital.

Another time, I was so weak for an entire week, about two months ago, I could
not move without him helping me. I was like a wet noodle. I chalked it up to
an IVIG reaction.

I have these times of weakness. I have trouble breathing all the time. I tried
that test where you take a deep breath in and count out loud. I can never make
it past 20. I often cannot finish a sentence without runnning out of air. It's
so embarrassing if I'm talking on the phone to a medical office or in person.

My arms are so weak I can't wash my hair, or hold them up basically at all.
Sometimes my husband feeds me. I choke on my food, too. My legs are really
weak and I can only walk a little way. I tried swimming over the summer as hard
as I could thinking I could recondition myself. I swam for 30 minutes and spent
the rest of the day in bed. When I was done swimming I couldn't even walk to
the house without feeling like I was having a heart attack.

I hold a container of menthol type pain cream under my nose every day for hours
and breathe it, it helps me breathe. Some days are really bad. If I don't talk
at all I can breath much more freely. If I have appts and have to talk, my
breathing is strained and uncomforatable all day. I dont' know what to do.

My neurologist won't see me until after my swallow study, which is in January.
I think the first week of January. I am also having a Pulmonary Function Test.
I dont' know when to go to the ER because unless I have a totally silent day, I
could be there everyday.

If I get up and move around, I have such severe pain from holding up my head,
using my arms, etc I need Vicodin. The only thing that is comfortable is laying
in bed and not talking.

Any advice? As I started reading other's stories, I thought, man, I'm really
screwed. I think there are multiple times I needed to be in the hospital but
had no idea I had this and no one recognized it when I said "I CAN'T BREATHE"
including just two weeks ago when I passed out cold in the lab having a blood
draw. That was just two days before I got the diagnosis.