rockenmamaof5

I wasn't screaming and crying outloud (inside I was at least for the first few minutes) then it all went away. Weird. I go from one extreme to the other and it *****! I just wish my body would make up it's mind. And yes it feels good Katybug! I'm just so over all of this. I was a former Ultra runner ( longest race I ran was 100 miles) and training for all that was NOTHING for compared to dealing with all this. Thankfully my body is crying uncle and things are finally showing up in tests so within the next few weeks pretty much what's going on with me. It's not going to be good, but at least I'll know and we can get a plan started. That's all I can ask for

Thankfully I was able to lay down the whole time. ALL this was soooooooo much easier to deal with than my tilt table test and I didn't even stop my medicine for that which they had me do for these tests. I'm wondering for those who went through the testing, Did anyone else get extremely warm the last 4-5 seconds of blowing out during the valsalva? My back got warm and my leg got warm in fact I even said OMG I think I might have pee'd myself (got a cath in and have cath bladder strapped to bag) but then the the next time I had to blow my whole body just heated up. It stopped once I was able to stop blowing and relax but ****! And the QSART. I was feeling the electrical charge before the lady thought she was starting the test. I had no idea that I would be feeling any type of pain. I joked that had I known I was going to be "electrocuted that maybe she should move the stuff to my head lol. Thankfully the pain stopped after a minute or so. And I found out afterwards that the Neuro who ordered this (mine just had a baby) just started vacation. LOVELY

I feel like I actually be close to to maybe not having a complete diagnosis/s (since it seems complex) but at least close enough that we can get a better treatment plan. I had my appendix taken out a few weeks ago, despite going in for weakness, testing positive for rectal bleeding but in turn they found inflamed appendix during cat scan (still haven't dealt with lower gi bleed). Spent week in hospital , released day before neurologist appointment. Major decline from the close to 2 hour drive each way to neuro's. Ended up spending a week at the local hospital and getting a round of IGG and being realeased just in time for yet another appointment at Neuro just to get admitted at the hospital there since I wasn't responding to the IGG yet. Ended up loosing function of bladder while at hospital.. Tested Positive for SSA and I already am positive for small fiber neuropathy which when I was diagnosed with it 2 years ago was told it was probably idopathic and would probably just cause sensory issue's in hands and feet. WRONGGGGGGGGGGGGGGGGGG major issue's in legs and whole body and everything else. I go for autonomic testing soon . Doc thinks it's an auto immune causing the small neuropathy which in turn is causing the dysautonomia . Anyone here deal with loss of bladder function (bladder totally holds onto urine and loss of feeling the need to urinate). And if so did it ever come back?? Thanks in advance

I have a presumptive diagnosis of Myasthenia Gravis at the moment that keeps it approved. Now the tricky thing is getting it done. My neurologist at a big hospital almost 2 hours away will do it, but the neurologist where I live will not do it. They want a clear cut diagnosis. Right now my PCP is trying to get ahold of my neurologists to try and get it set up here since he's willing to do it. Too many people worry about CYA and not about the patients. Unfortunately there isn't always a clear cut answer when too much mud is in the water so to speak. Like you it seems more abnormalties keep popping up. I am TIRED of hearing atypical this etc etc. We're hoping the muscle biopsy I'm getting done will hold some answers and I am also getting a Single nerve fiber emg to hopefully clinch the MG diagnosis or who knows what. How long do we have to suffer or how much do we have to suffer before they stop worrying about CYA. There are times when the befefits outweigh the risks. I don't think it should be up to the insurance companies to decide that and if you have a good doctor, they will be more worried about you than their own a$$ Good luck!

I've had 3 ivig's this year and am getting ready for my 4th. For me it has helped get me out of a "vegative" state so to speak and keep me from it so the risks are more than worth it to me. I still don't have a clear diagnosis (or 's) since it may be multiple things but since my body has some response (it's no miracle cure for me) to the IVIG it's the go to thing when things get bad, like now. I'm sorry you have to deal with insurance crap. Last thing we need to deal with when trying to get healthy! Hope this avenue works for you! If not I pray you find one that does! Hugs

yep dealing with blurry vision myself. Today I woke up not being able to focus. Having a bad day and waiting to hear back from doctor about getting another IVIG. My MG causes double vision but the blurry vision also seems to be caused my weakness (at least for me)

I went in on Thursday, had a biopsy done, got put on progesterone and go in next Wed for a SIS ultra sound. So far day 3 on progesterone and bleeding has not slowed down a bit. If it doesn't I may have to call because I'm not feeling to great as it is

I've dealt with the ovarian cyst before and the bleeding and did the same thing you did with the BCP. Things have just been weird ever since my first hospital stay this year. Like I mentioned the only reason I was thinking the whole autonomic thing is when I "over do it" per sey my symptoms tend to get worse and the bleeding goes right along the same pattern that all the rest does. I don't have POTS I may have primary or secondary dysautonomia. Anyways I've got to get myself back into the GYN anyways something is definitely up. Thanks Momto!

Thanks for the info Sunshinegirl. I had an ablasion close to 10 years ago. I did just have an US of my abdomen but maybe I need to make a GYN appointment

does anyone else Dysautonomia effect their cycle? I bleed every single day. Not much but it's every day. I attribute it to the dysautonima because anytime my body is feeling extra week, I bleed more (like right after or not long after doing something that my body feels is strenuous. Thanks in advance! Pam

I use a Garmin for my HR. LOVE it! I've had a full workup. 2 stress tests during last hospital say, one treadmill the other chemically induced since the first one was abnormal and it got stopped early between the blood pressure 172/106 and how I was feeling. Also had an echo during the stay and then the Cardiologist told me after my Tilt Table Test last Friday that my heart and cardiovascular system are great. So I failed the test despite the Cardiologist thinking I was going to pass it and only doing the test because my Primary doctor requested it. He told me to make an appointment in 2-4 weeks for a follow up. I don't think I'll be doing that.

Gotta "love" getting all sweaty and wheezy from just getting dressed I'm not asthmatic but doing anything is starting to get me wheezing. Anyone else? I've got some replies to others here but too exhausted and I have to drive to DD's Softball game in a few. Hope I'm recovered from my getting dressed and little bag of snack packed before I have to leave in 30 or so minutes. THIS *****! Course you all know it, just needed to get it out of my system for the moment MTA: can't believe I was a ultra runner and weight lifter just a few short years ago. My body still looks the part but it's not even close to living the part

I was borderline positive (according to the results sent back from Mayo I'm positive) for Modulating AchR antibodies

Thanks Katy! I highly suspect this as t have a lot of the symptoms. I had suspected for awhile that I may have a connective tissue disease and my Doctor was the one to encourage going to see a Rheumatologist. My PCP and Neurologist are getting things together to send to John Hopkins as they would like me to be seen there. I see my Neurologist in a few weeks and even if it's not her specialty, will mention the EDS. There is a strong family history of hypermobile joints as well as dislocations among other things.If anything she may put it in my file as a possibility and something to look into when I'm at JH. Thanks again! Pam

Sorry to hear it didn't work! I totally understand about not wanting your son to have to be on narcotics long term! I hope it helps him!