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