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k&ajsmom

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About k&ajsmom

  • Rank
    Advanced Member
  • Birthday 08/23/1981

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  • Website URL
    http://sarah1nat@gmail.com

Profile Information

  • Gender
    Female
  • Location
    Va Beach, Va
  • Interests
    My family and friends and copious amounts of gatorade...blahhh

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  1. Thank you Corina for the encouragement. I am quite shocked that so many are on this med. Pleasantly though. =) maybe it will help both conditions for me! Thx Naomi, sometimes i wish i didn't need to know and could just trust blindly. But we both know that could be a mess with our medical system. Still waiting for results btw....=/
  2. Oops...wasn't done there. Lol Anyways, I can't find any article connecting mg and pots, but i guess off one things out of whack maybe it was just a dominoe effect. Infusions of steroids are his second choice I believe fir mg. Yuck. =( Arizona, Hm, that makes sense to me. There is just so much we don't understand with autoimmune diseases. I wish they would find some missing links. Im reading Alot on it but not yet dove into sfn but it has to all fit somehow. I'll know more about treatment soon =p nervous... Alex, Wow! I'm printing that out to take to my follow up. The only thing is my titers were significant for mg so? I'm gonna be researching this some more.thanks for the lead.its def.something to discuss. Naomi, I can't find a connection either but its def a question for Dr.Chemali! I am symptomatic.i have breathing"heaviness". Mild swallowing issues and daily muscle exhaustion and fatigue.i just thought i was definitioned but couldnt figure out why i was so unable to pull myself out of it. I do get double vision mildly and tracking issues as wellbut no Ptosis. Thank you all for the feed back and support and will keep you posted after i interrogate the poor Doctor soon! Lol take care
  3. Sorry its taken so long to reply, had to work today and was exhausted...blah. Anyways, hanice,i can't believe the lack of communication with your doctor and tech! =o crazy, but yr totally right in the fact that we have to be our own advocate. =) Naomi, My achr ab was .04 ref less than.02 Striational was h 1<480 ref 1<60 According to the doctor that s pretty high and undeniable mg (possiable thymoma) I haven't actually gone back for my follow up yet, but until my ct results are in it would be pointless. I did however speak to them again and lems is still possiable but not as likely considering blood work indicates mg, but because of automatic issues wants to be certain there is no carcinoma. So just waiting and waiting now..sigh. Looneymom, Mestonin is being mentioned as a first line med for me assuming there is no cancer
  4. Hi hanice Thank u for responding. I have had none of those done actually. I was told initially i would have a MRI to rule out chiari, so hopefully that will be done. I will ask doctor about the other two. I was diagnosed ncs with autonomic dysfunction as a child and had other ailments (Migrane, gerd etc) i adjusted over the years and"dealt" with the condition.it was bearable butlooking back, only because i altered my life greatly. Last year i became very I'll with automatic issues and fatigue as well as gi and pain issues.was diagnosed pots and now mg. Last year was def. the turning point. I feel there is something still missing. If mg doesn't cause automatic issues, why did they both flare at the exact same time??? The million dollar question i suppose...lol =/
  5. So as i posted earlier last week, I've been diagnosed myasthenia gravis and sfn, pots. I'm very confused....still Myasthenia isn't associated with pots or sfn or dysfunction in any article i can find. So does this i still don't have my cause of pots since the neuropathy is considered mild? I feel like im back at ground zero in a way.yea i know one of the reasons i feel bad but not"the" reason ive had autonomic issues. Any ideas i can discuss with the doctor? I'm at a loss and feeling quite hopeless with this new diagnosis. I don't wanna give up and have to keep fighting but am way over my head now. Thx
  6. Thank you so much Katy bug for your feedback. Ive been scared to take , and that gives me a bit more confidence. =)
  7. Welcome! Ugh, brain fog. Yet to find a reasonable explanation or treatment. Sorry to hear your dealing with this. Good luck
  8. Res posted a similar topic a few minutes ago but i didn't want to hijack the thread. I have low Co q10 levels and was told to start supplements today.I've read it can cause dangerous drops in bp, being already hypotensive this is worrisome for me. Any personal experience here with dosing and side effects to this supplement? Thx guys and hope all is well.
  9. Wow, yr thread was perfect timing for me.i was just logging on to ask about coq10. I was just diagnosed with some other issues and told my coq10 levels were low as well and was wondering what dose to take.ive read it can cause hypotension with those of us whom already have hypotension and was worried about dosage. I'm not much help to you're questions right now but I'm starting tonight on my supplements.I'm gonna take the lowest dose they have and work my way up to make sure there are no adverse reactions so I'll let you know if it helps. I also have been diagnosed mg or lems so i don't know what symptoms are related to what but hopefully will know soon. Good luck and will keep ya posted.=) ~Sarah
  10. Thx Naomi...=) Also i forgot to mention my coq10 levels are low...is this significant of anything?
  11. Thanks marigold sometimes i do feel like an alien around all these well people lol but i know UT can always be worse and pray for insight in all this. Thanks Alex for the link...initially ivig was recommended as part of the pots treatment but it sound like that may be on hold till the other component is under control. Mestonin and infusions of steroid were mentioned as the first lines of treatment for mg or lems. I received all thus info from Dr.Chemali s assistant and won't actually meet with him to discuss specifics till after the cat scans are done to rule out cancers. So i will def.be pressing him for all options. Ivig sounds . Na, I tested positive for achr ab, and striational antibodies.i also have a high adolase indicating muscle damage. I very happy to hear your negative on your screenings. Good, good news! If i may ask, what did you test positive for and how did they rule out or differentiate from mg? I hope yr future appointments are helpful. I've heard there I'd a wall i may hit with dr.c eventually and may have to look else where but for now I'm hoping for the best.
  12. Hello everyone, I hope everyone is fairing well Dr.Chemali has just dIagnosed me with autoimmune pots, small fiber neuropathy and says i also have either myasthenia gravis or Lambert Eaton. I'm overwhelmed (as usual lol) but mostly terrified of the implications of cancer, especially with lems since I've been a long time smoker.=( I'm not sure what exactly to ask you guys, but I'm really scared and was wondering if anyone could give me any info on how they differentiate the two diseases. Also does anyone have any experience with all this? I guess any info you could give NE through your knowledge or experience would be appreciated. I don't know what's causing what or if they are totally unrelated.ugh thx =)
  13. Nothing yet. Im in a waiting speculating phase till he calls =/ these came back on my paraneoplastic panel from mayo. So im freaking a little about the possibilty of cancer and just trying to find a bit more info on differential diagnosis with these results. For me its like reading in the dark because this is so out of my realm of knowledge.
  14. Hi guys. Can anyone tell me if they have had experience with these labs coming back positive and if it led to a diagnosis of anything for u? Adolase 10.6 Achr recp binding ab .04 rfefernce less than .02 Striational ab 1:480 reference less then 1:60 Achr recp modulating ab 19 percent reference less than 20 percent (reported as loss of achr) Everything else thus far is normal Ive read an indication of muscle disease and mg but im confused. Thx for ur input ~sarah
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