Just diagnosed...
 

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.

Tracy, That’s great that you got diagnosed. Did you have positive Acetylcholine receptor antibodies? MuSK antibodies?

Do you think the IVIG has helped the MG at all? It sounds like it has. Have they tried subcutaneous IVIG (i.e., Hizentra) for you?

I’m sorry you’ve had so many infectious type diseases. Have you seen an immunologist? It might be a good idea for them to check out things like IgA, IgE, IgG levels, etc.

Are you on any pain meds? Some drugs can make MG worse, like Neurontin. That’s often the pain med of choice for neuropathies. Neurontin/Gabeptentin can not only make MG worse but it has been shown to bring it on or cause it. There are many drugs that have the potential to make MG worse, including antibiotics. Vicodin can make MG much worse, including breathing. You have to be very careful with drugs like that when you are bad off.

Have you checked out the MGFA (Myasthenia Gravis Foundation of America) website? www.myasthenia.org

Have you ever had your vitamin B12 checked? Even if you don’t have a deficiency, B12 has been found to help improve peripheral nerve damage when taken in higher doses (studies have been done all over the world). It helps things like neuropathies, shingles and Bell's Palsy, to name a few.

What I am concerned about is how bad off you are. With MG, the worse you get, the longer it can take to improve. Because you have been so bad for so long – without meds – that may be why you are in such bad shape. What MG drugs are you on? Mestinon? I would be cautious about doing any immunosuppression given how many infections you have had. Steroids are fraught with problems and are very hard to ever get off of.

There are three reasons to be in an ER:

1. When you can’t swallow.
2. When you can’t breathe in or out well.
3. When you are overall weak, such as when you can’t get out of a chair.

And when I mean be in an ER, I mean dial 911. Why? Because you cannot tell how bad MG will get or how fast. It is very scary, as you’ve already experienced, and the best place for you is in a hospital. They need to put you in the ICU so that they can monitor your heart and oxygenation. Normally, they do plasmapheresis for someone in an MG crisis. Plus oxygen and/or Bi-Pap to help your chest wall muscles take a bit of a break.

Do not be shy about doing this. To me, it sounds like you don’t have enough meds right now. You don’t have to rely only on your neuro. Neuros and pulmonologists work together in a hospital to help an MG patient. I will bet that you could call your pulmonology office first thing in the morning and get in that day if you can’t breathe well. Of course, it’s a fine line between doing that and being in a hospital.

A pulmonologist needs to run MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure) because those readings reflect most closely how someone with a neuromuscular disease is doing. They can also do an arterial blood gas to see how bad off you are. One more test a pulmonologist can do is an overnight oximetry. You may be hypoxic at night and not even know it. They often use 88% as the lowest a person can be before they get oxygen and/or a Bi-Pap. You could do a sleep study too but right now you seem to need more urgent attention.

Sharp chest pains are not normal. ;) Did they even once check your oximetry when you were doing all of that cardiac testing? Investing in an oximeter has meant the world to me. It made me aware of what my “normal” is and when I’m doing worse. No, that’s not a substitute for instincts or other “signs” of MG worsening but it is a useful too. They have a Nonin GO2 oximeter now that is much cheaper.

Did they even check a D-Dimer on you to make sure, after all that bedrest, that you don’t have a blood clot? The other thing that can cause chest pain, if they don’t do an esophageal echocardiogram, is bacterial endocarditis. Our friend had that and they couldn’t see it on regular echos.

Since you are so bad off right now, you may need to scale way back on activities. You may have done some already, since you are basically not doing anything. Use paper dishes. Don’t stand, only sit or lie down. Don’t talk if you don’t have to. This is the time for you to be very serious about getting better. Maintenance is key with MG. You don’t want a lot of “hills and valleys” with MG. The more steady you can keep things the better. And right now, you sound like you are way down in the valley of weakness!

And what is this BS about “my neuro WON’T see me” until after the swallow study? Does he want to see you in court? :eek: It doesn’t sound like you can wait, damn it. What is a swallow study going to do anyway? Prove you can’t swallow. Why do they need more proof? I know that a swallow study can be useful but it shows weakness in one moment in time. The next day those muscles that affect swallowing can get worse. MG can affect any of your 640 skeletal muscles at any time and to varying degrees. Besides, you need help NOW.

Seriously, if you need to go to an ER to get help, then do so. MG can kill if it is not sufficiently treated. No, it doesn’t happen a lot but it can if you don’t slow way down and get some help. I’m not saying that to scare you! But newbies tend to think they can “push themselves,” even a little. You can’t afford to do that right now. A positive attitude is great but it can get you in trouble, make you think you can do whatever you put your mind to. MG pushes back and sometimes when you least expect it.

And if you haven’t done this already, please do. Write down all your personal information, emergency contacts, insurance info, doctor names and numbers and meds and amounts on a medical alert card. It doesn’t have to be fancy, it just has to be done!!!

There’s a huge learning curve with MG. Take some time to let it all sink in. I’m concerned that your doctors are not taking this seriously enough. So you take it easy, get them to help you and do what you can. You CAN get better but it’s going to take some time. Hang in there!

Everyone here is very knowledgeable and super nice. Ask anything, they'll be here for you!

Annie

Welcome Tracy!

Ditto to everything Annie said. And it sounds like your hubby is very supportive - that helps a lot.

With Holidays coming, you must be very, very careful not to try to take on too much - even if it means disappointing yourself or others.

Take good care and keep us posted.

Sue

I also welcome you Tracy. If it wasn't for the knowledge I have received from this forum, I would be up a creek. I love my neuro, but I don't ask him any questions because they seem to be in a hurry and so busy. I don't want to make him angry by going on and on, so, I get all my info from here. I hope you begin to feel better soon. busy

Welcome!!
 

Tracy,
Welcome to the forum, You will find so many helpful, knowledgeable and caring people on the board. Remember we're all in this together!

Rachel :)