Debra,

Thanks for your response. I'm sorry we share so much in common =( i wish it was winning lotto tickets instead.lol

Currently, I'm not on much. Just allergy meds and coq10 because i am defiencient. However i have been on florinef, stopped because my hair fell out and kept ending up in the hospital with hypokalemic crisis, and really it did no good for me anyways. I've tryed every ssri and snri, midodrine did nothing. So now I'm waiting for my new neurologist to call me and hopefully get me on something for the mg. I believe I'm having lung involvement and hurt so bad i can't leave the house (which makes the pots rile up). I'm guessing mestonin will be my next med.


Im really in limbo right now and was told i have mg three weeks ago and still waiting waiting waiting for a follow up...ugh

Have you had any success with meds? Did your conditions start at separate times for you?

Take care ~bear

I have had great success w/ IVIg and mestinon and some success w/ prednisone. But currently, I have started on Rituxan for immunosuppression because I have at least 3 autoimmune conditions that may benefit from it. It is too early to tell yet if it is going to work.

MG started first and then POTS a couple years later but Sjogren's may be around the same time as POTS but not sure. It is more elusive. Neuropathy is sometime after MG too.

You should call your neuro and request a trial of mestinon immediately. There really is no excuse that the doc could have to wait, since you have positive blood tests.

When you say that you have "lung involvement," are you saying that you are having trouble breathing in some way? If so, that can be an emergency. Can you take in a deep breath? When you do, how high can you count? I have respiratory involvement and have been to the hospital way too many times...Please describe your experience so that I can help.

The longer it is taking to get a phone call back from my doctor the more I'm getting frustrated.he is supposed to be the best though.

I saw him in July looking for the reason why last year i became so ill. He ran a ton of tests.called me the weeks ago, did cts 2 weeks ago to rule out carcinomas and haven't heard a peep from them. Ice called several times. Frustrating.

For about a year i will get this pressure on my chest.i went to the er the first two times and was told was anxiety, even though i was Tachycardic and hypotensive...insert+ eyeroll+ these episodes feel like there is a band around my chest like my lungs just wanna cave in. Im recovering from a4 day episode of it now. Reading that this could be mg is now terrifying that it has been happening for a year. =0 i feel like i can breath but have a constant urge to yawn and just doesn't feel like enough air. I'm asthmatic and have allergies too but this feels different in that my airway feels unobstructed. Like an elephant on my chest. i do not lose my voice or ability to swallow but do feel breathless when talking. Will mestonin help this hypothetically? I think ill call again in the morning and try to get around their voicemail somehow .

I meant, how high can you count on one full breath of air? Ten is not good at all and if you are short of breath talking or eating, you probably need to be at the hospital to be assessed.

Being unable to yawn was one of my first ways of describing to the ER doc what was going on. I could not get a deep breath in. What it actually is: you cannot get your diaphragm to push down, that is the muscle affected. Having tachycardia is a sure sign that your body is under stress.

They need to check your vital capacity, your negative inspiratory force (NIF), and most importantly your arterial blood gases (ABG). The first two are breathing tests and the ABG is a blood tests that is not fun but will tell them a lot.

Unfortunately, people w/ MG have to often educate the people treating them to get the help they need.

You sound like you need help now.

Welcome sarahbear!

I am technically still a mystery, but LEMS and MG are high on the list.. I get IVIG for whatever this is.. I have many of the symptoms, especially of LEMS it seems.. but I do have confirmed Small fiber neuropathy and have had tachycardia since this all began with hypotension, however i guess for whatever reason the Tilt table test wasnt' officially positive for POTS.. which is odd, as I got very lightheaded and my heart rate went up to 164! can't remember what my BP was though.. My eyes showed autonomic involvment as well. Sjogrens has also been proposed..

Sounds like you definitely need some sort of treatment asap! I only do IVIG and it works really well most of the time.. I also have the elephant sitting on my chest thing swhen symptoms get worse, it's not fun at all!!! Good luck!

Bny806
Sounds like u have pots! I wonder why they weren't definate on the diagnosis. I've have autonomic dysfunction since i was a toddler. pots developed last year the same time all my other symptoms hit. So i don't know what caused what or if its a coinencedence. I do know it stinks either way. Lems would be a perfect fit for me except blood work insists its mg. My eyes are involved too! Ice never meet anyone else with that! My ttt was a gross fail after 6 minutes up. My legs were purple and i couldn't breath. As a kid i failed eight of them so obviously a lifer with the auto.issues...yuck i feel for u. Ivig its something im nervous about but its something the doctor is thinking about for t he pots sheet the mg is stable.

Doriandean,
Its nice to meet you. I Hope we can both find our feet again. This forum seems wonderful. =) i joined a day ago and am already finding it beneficial, both emotionally and educationally. Its nice to not be alone. Take care ~bear

Sarahbear, can I ask what are your autonomic symptoms? Besides the MG, I am having a lot of autonomic symptoms that no one has addressed yet. So what kind of tests and treatment did they do for the autonomic dysfunction.

Thanks,
kathie

It's a pleasure to meet you. I look forward to getting to know some of you. As a real newbie, I'm kind of lurking about while trying to find my footing.

Debra,

Thank u so much. Isn't sad you all are informing me more than the medical community. I've madeanother call to My doctor..again...voice mail. If i don't receive a call soon,i will seek er evolution and bring the info you guys have given me with me. U seem ok this morning but add the day goes on i know it will get worse. Thank u a million times. Its scary in the beginning with noone guiding me. =( <3

Sorry about all the typos...=p lol