hi everyone, newbie here
 

:hug: hi,

Glad to find this group, although some of your experiences terrify me,i find your strength encouraging.

I am in the middle of being diagnosed myasthenia gravis. (positive achr ab and striational)
I also was diagnosed with posteriol orthostatic tachycardia syndrome, neurogenic syncope and small fiber neuropathy as well as a few other odds and ends diagnoses.

I have lots of a questions as i sit here waiting on ct results but i save them for after my intro..lol
For now though, does anyone else have pots or autonomic dysfunction (btw,ive had ncs since i was a toddler, pots developed last year) and it not be lambert_eaton?

I look forward to meeting everyone!

Thx ~ Bear

Hi Sarah,

I have severe MG, POTS, neuropathy, Sjogren’s syndrome, and possibly LEMS. In other words, I get where you are coming from!

What medications are you currently taking?

Debra

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 .

Also, when u say how high can i count, does that mean holding my breath or while inhaling our exhaling? I've read about this but wasn't clear when u count..lol

Welcome and sorry you are going through this. In the ER, they told me to exhale and count. I could only get to 10. Mestinon does improve my breathing. But it does not cure the symptoms. It only makes me about 20% better and it has a very short duration, about 3 hours for me.

Hang in there, It is a slow journey
kathie

welcome sarah
 

Welcome to Neuro talk.Glad to have you post. You will make some new friends,and find support and information. There are many folks that have the same conditions you do. Again welcome to NT. Ginnie

Hi Kathie & Ginnie,

Thank you for the warm welcome and concern. In the"real"world its hard to find anyone who gets it. They think I'm fine and just keep pushing me.

Eek Kathie...i really need to take this seriously. I believe I've been in that ten range but i didn't even know what i was dealing with till i researched myself. My doctor needs to get it together and treat me before i end up in the er. =( just eating dinner earlier made my chest heavy. I've been a 16 year smoker so i guess i blamed it on that for a while. Time to quit and start a new page. It sounds like must people are on a steroid and mestonin. I will interrogate the doctors voicemail tommorow.

Thank u all for the welcome again. Take care =)

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.