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.

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!

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

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

Cait- I know for me they said they could put me on beta blockers (to lower the heart rate.. but it also lowers the Blood pressure).. My heart rate when this all hit was resting 140's (prior to all of this mess it was 60's resting).. I have declined the beta blockers, as when I have IVIG after a few days it helps the tachycardia and lightheadedness... it's wearing off now and my resting hr is 115 or so, ugh..... I fear beta blockers, as I think it would bottom out my blood pressure and cause me to faint .. can't win I guess!

I have bad dry mouth and eyes as well.. my tongue will even bleed at times - yummy! :) Eye drops are the only thing I do there.

Kathie,

The basic tests for automatic issues are, tilt table treat, qsart, skin biopsy,valsa valva test and ruling out cardiac underlying issues. An excellent website with a fantastic forum is dinet.org. It gives detailed definitions of various auto issues like pots,orthostatic intolerance, neurocardiogenic syncope, and mitral valve prolapse. These are all forms under the umbrella term dysautonomia. My symptoms were wide ranges of tachycardia up to 200 with little to no exertion, to Bradycardia, down to 38 sitting up. Digestion issues of all sorts, fainting, low bp all the timewith narrow pulse pressure, pupillary instability, headaches, angina like pain,pvcs, afib,vtach, gerd, cognitive fog, heat intolerance, tremors, medication intolerance, etc etc...lol

Its a diagnosis of exclusion most of time but they are getting closer to autoimmune connection in some potsies.

Treatment over the last 30 years hadn't changed much. Amitryptiline,or ssri meds are used alot to reset the nervous system. Didn't work for me. Florinef is one that helped alot as a child but as an adult made me sticker. Beta blockers usually are a first line approach with midodrine. Betas help the heart and midodrine helps raise the bp and counteract the side effects of the bb. This is counterdictedin asthmatic s and some other diseases so i was never able to do it. Salt tablets, gatorade and compression stockings are a mainstay for most potsies to help blood pooling and raise bp.

As bny mentioned,ivig is a treatment that sadly must doctors don't approve of yet for dysautonomia. I think it will be soon though as it does appear to be beneficial in some. I think it really depends on the epidemiology of the syndrome.

You can what's known as a poor mans tilt and check your results:
U measure your bp and heart rate lying down after 10 minutes, then check it usually upon standing then again in 10 minutes of standing and then again upon sitting. i believe anything witha heart rate increase greater than 30 bpm is considered pots suspicious and further testing is needed. U would need to reframe from caffiene foran accurate result.

Geesh sorry so long there...i got rambling on....lol

I have the digestion issues as well, no fun! My pupils were + on the testing as well.. I do have this issue... where I will focus on something I'm doing up close to my face and then it's like my eyes won't accomodate back when I try to look at something at a different distance.. it takes a few minutes.. it's really strange... I think my sweat test was normal, and maybe that's why I wasn't officially diagnosed? Who knows. Interesting about the bradycardia- i get that as well sometimes.. I feel a little lightheaded with it, and my head feels really weird.. I always know that's when I'm having it.. then it jumps back to tachycardia quickly after those episodes.. not a lot of fun.. I feel like every single system is invovled with all of this!

Bny,
I feel for you =( it is truly no fun. I failed all my tests..But sometimes i feel like it depends what day yr tested.some days I'm less symptomatic than others. Digestion issues sux. I wish my diseases would leave food out of it. Don't mess with my food!!! I am such a foodie...lol

The eye thing sounds just like me. My pupils bounce instead of constricting and dialating properlycausing horrible light and tracking issues. I think I'm having mg eye issues too so no fun at all. =( i defiantly agree it feels like a full body assault from within. Yuck

yes... I used to LOVE food, but now I just see it as more of a chore most of the time, as it can make me sick.. I have been strictly gluten free x over 2 years since this all started in case that was the cause (i have family members with celiac).. I do love it when I find food I like and it doesn't cause issues! :)

haha, yup, right now I'm late for my IVIG and everytime I catch a glimpse of myself in the mirror i'm a little horrified each time - my face looks all droopy and lopsided.. and I realize the thing I am seeing in my right eye visual field is in fact my droopy eyelid! At least I have more than a snarl of a smile again though :)

Hi Sarah,

I also have POTS dx- probably hyperadrenergic type secondary to Ehlers Danlos Syndrome- had symptoms my whole life... I got my POTS dx after I was on an EDS board and someone was talking about pre-syncope and I looked it up, ha- thought it was normal to have vision black out when standing as it had happened my whole life! I am also new and working on possible MG dx. My POTS has been fairly well controlled, but having a battery of symptoms and fatigue lately.

Nice to meet you :)

Bny,
I know the feeling, food its a chore some days =( I'm really glad the ivig is helping you,i hope u find some relief soon.

Mutant,

Eds is a component I've been interested in, but so far i have not found a doctor willing to test. I know how it is, I've been blacking out since the day i could stand on my own..lol I've had full conversations where i couldn't see or barely hear waiting for the world to come back in focus, all with a smile, faking it.I'm told i have neuropathic, autoimmune pots. I hope they get you figured out so you can get your symptoms back under control

Feel free to message me with any EDS questions. I've had my dx for over 20yrs. It is weird looking into MG world with newbie glasses- with EDS I'm used to being one that has been around and can answer most things :)

Good luck!
Karen