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Beccapooh
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I go for my tilt table test next Thursday. I've had a ton of blood work done and I'm wearing a looping monitor as we speak.

I've had syncope for years now with no explanation. As of last year, I've started having severe dysphasia, severe fatigue, muscle weakness, speech problems, pain in my chest, pressure in my chest, urinary and bowel issues to name a few.

I've been tested for LEMS and MG and although some of the tests of come back positive for MG, my docs still don't agree that that's what I have for sure. At least, they don't think that that's ALL that I have. A lot of my symptoms aren't MG symptoms at all.

Anyway, after speaking to a Cardiologist and 3 Neurologists and my family doctor (who after looking back over my file for the last 10 years, feels kinda bad that he hasn't sent me to a cardiologist sooner!!) and they've all come to the conclusion that my symptoms more fit with POTS.

I've even had blood tests over the years that have pointed to something of this nature. Namely some ANA test??

At any rate, I would love any feed back that y'all have for me. I'm reading posts on the site as quickly as I can, but I really need to support right now. I feel like I'm starting all over again with the whole DX issue. It was nice to "have MG" because I wasn't labeled as crazy or lazy anymore. But, now I feel like my friends have about had it with all the different "things" I have (or don't have!). I'm getting to the point where I'm afraid to tell anyone anything anymore for fear of being teased or not believed.

Thanks, in advance, for all of your support!!!

Rebecca

34, Female

Reunion, CO

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Dear Rebecca-

Welcome-

I understand exactly what you are saying about the whole diagnosis thing. I am also still waiting for clear diagnosis. Everything seems to be we think, not sure, unclear by tests, etc.

I am still hoping for clarification in many areas, but after many years of this- I will be happy to just get any relief from symptoms and back to some functioning level, regardless of diagnosis. It is very difficult to explain to others and they just don't get it, for the most part-although supportive. I did wish for "the label or diagnosis" more than anything, other than a long list of possibilities and symptoms. Part of the process it seems. I hope the new path they are now looking at will be helpful in some way for you.

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Dear Rebecca,

I very much understand your feelings - most of us have gone through the same things. Hopefully the tilt table test will give you a definitive answer, and your doctor can proceed from there. Wishing you well tomorrow- let us know how it goes! -Ellen

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Hi Rebecca and welcome to the forum :lol:

You'll find that we're a sick, but supportive bunch, and I hope you find many answers here.

I also have features of MG and am currently waiting to go to Hopkins so I can get a full workup, but my most troubling symptoms come from the POTS (dizziness and nausea are the two killers for me). I also know what it's like to have family/friends who think I'm crazy or being dramatic...I went through all that when I first got sick (my favorite story is when my grandfather walked right by me when I fainted because he thought I was faking).

Since my diagnosis, things have calmed down a bit. After over a year of symptoms, my family and friends have learned to accept my health problems, and at the very least, keep thier doubts to themselves. It has also helped having doctors who stand by my diagnosis, even though it took me a long time to find a team that worked.

I've learned so much from this forum, and have met so many wonderful people, I hope you have the same experience!

Hugs,

Lauren

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I just wanted to say Welcome.

I hope you will be able to get some answers after the TTT. I know it was nice to finally get a name to what was going on for me. Even though my systoms have not improved much, they at least know who to treat me now. There are many people here on the forum that after getting on the right treatment are able to main a "nomal" life.

Again I wish you the est with your testing. Please keep us posted on how it goes.

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Not yet. My TTT is next Thursday (I just got the call from the Cardiologists office today). All I've had so far is blood work and I'm wearing a looping EKG machine thingy. LOL - Is thingy a technical term or not??

However, I've had so many of these symptoms for so long that my PCP is somewhat embarassed that he never noticed them all together. He's been giving me anti-anxiety meds and telling me to "de-stress" my life for about five years now.

I had, what we thought was, an MG crisis in March where I was nearly intubated due to breathing trouble. I've got tons of other symptoms, other than SOB, too, but I don't want to bore everyone with my baggage.

I'll wait for the absolute DX to vent I suppose! :lol:

Speaking of TTT, how was that test for everyone? My Cardio says that not everyone faints, but you can still have POTS. Is that true? How in the world?!?!?! Can some of you tell me your experiences, please??

Rebecca

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Guest dionna

tilt table test... i had two of them. first of all the tilt table test is like a bed/board with straps on it. dependin on what the doctor oders depends on how long the test is and at what angle you are stood at on the bed/board. the first one i had i think it was slightly less than exactly perpendicular to the floor and it was supposed to last 45mins. in the beginning i was symptomatic but didn't actually faint. then halfway through the test they put nitroglycerin under my tongue and immediately i became very sick, lightheaded, dizzy, wasn't able to speak correctly- i just kept repeating the word pain, vertigo, stomach all in knots, etc. actually it was one of the most painful times i had ever had. i was strapped to the board so i wasn't able to move or sit or anything to try to alleviate the symptoms any. the second time wasn't as bad- just a lot of tachycardia and it was done at NIH at a different angle and with more test going on on the outside. i didn't faint but they still saw that i was messed up and that my medications weren't working correctly. atleast that one wasn't as painful.

i'm sorry i painted a rough picture, huh? i'm really glad i did the test though. it proved that i wasn't faking and it removed all doubt from others minds as well when i was able to show them doctors proof! i was passing out everyday and everybody was having to carry my limp body around and i was hitting my head on a lot of stuff and they saw that so most people believed me anyway but for those who didn't... i even dislocated my jaw once and i really thought i had dislocated my shoulder but thankfully i just bruised it up a bit.

we all understand what you are going through right now because we have experienced it. i thought i was the only one in the world that passed out on a daily basis but i finally found out that i wasn't alone and i didn't have to go through it alone. i met my boyfriend at the hospital and he also has POTS (just hasn't been diagnosed yet). we are actually talking about getting married and he is the only thing i look forward to everyday. God has blessed us both. some people here haven't found anything "good" from POTS but if you read back some on posts i have started or responded to, you would see that i have found a lot of blessings. i hope you do as well. it will atleast help in giving you some sort of hope, and maybe mentally help you with the awful symptoms. take care of yourself and good luck. definately do the tilt table test. it is worth it and it will help diagnose you.

dionna :)

i'm a southern girl: thingy is definately a technical term in my book! :lol:

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