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Everything posted by k&ajsmom

  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
  15. Diagnosed at age 6 with ncs secondary to autonaumic dysfunction then again at age 31 with POTS dysautonomia.
  16. Hey guys, Anyone have any experience with high adolase serum levels? Cpk is normal but has been high in the past. Is this indicative of anything significant? My adolase is a 10.6, ranges are 1.3 to 7.6 for a normal reading. Ive read it may have something to do with muscle disorders. Thx
  17. Its amazing how every doctor or lab can do it different. Im curious, i know the test confirmed Pots (my gp spied that result) which i already knew i had, but is there anything else they can tell from this test? Like what kind of pots etc...? Just curious..thx everyone for ur encouragement. I was worried it was all for nothing. =)
  18. I was looking over an old one of mine recently and it stated av conduction delay, atrial enlargment, delayed qt..etc . I kinda freaked. I asked my current doc and he said ekgs are only a guide on whether they should look farther. I had and echo and stress test after the ekg and nothing was said about these things. He stated my frequent pvcs could have indicated those results but other tests proved it inaccurate. Either way its worth a call to the doctor to address it for peace of mind. Its def alarming what u find after the fact =p
  19. Thx dizzy, Wow i am so sorry u went through that. Ugh I am thinking he confirmed pots but i wonder if there was something else he saw. I was already diagnosed pots a year ago but never had a repeat ttt since childhood when diagnosed ncs secondary to auto dysf. When he said ?this test was beneficial for u, he implied, it will be beneficial for ur diagnosis and treatment. Of course he was trying to be vague stating that of course the doctor can only tell u why...lol word play is extremely annoying with this stuff, although i understand his position. I just am not sure, other than pots and similiar diagnosis ie: ncs, oi etc. What else it could have told him??? Irritating, as now i just have to wait and see. Thx for ur response =)
  20. Hi everyone, I hope everyone is fairly as well as can be expected. I had a new qsart, ttt, and valsavalva? Thingy today. Boy has things come a long way since the 80's when i last had one. Lol Dr.chemalis lab techs are AMAZING. I cannot express how impressed i am. The tech has a daughter with pots and has sadly lost a son to a weak heart. So i can truly say this man is in this with his heart and it shows. Anyways, I have one question. My ttt was very very short. He said it could be ten minutes to 45. After 5 he started looking concerned. My feet and legs turned purple (this has never happened before) but other than the gut wrenching stomach pain and breathlessness i was only moderatly dizzy. After 8 minutes he said we are gonna put u down now. What? I'm confused. Though i was symptomatic, only mildly commpared to some days and i cant figure out why he stopped. He said he got what he needed and said "i can only say this test has been very beneficial for u" my mom watched my vitals and she said though my hr bounced from 79 to 150 up and down, my bp stayed fairly normal. Although it bounced up and down it didnt plummet like it usually does. Im just confused, i expected he would need my syncope symptoms to "come out" and see my bp drop to diagnosis me.........? Every other time ive had a ttt, ive passed out like clockwork at minute 11, mind u that was a long time ago. On the risk of speculating, does anyone have a similar experience or have any knowledge of why he stopped so early? Thx, im worried they missed something becuase i didnt hit bottom, so to speak. ~Sarah
  21. Thx Angela, I have suto dysfunction all my life and allergies since a toddler too...so its the chicken or the egg thing...its def all connected somehow. Im seeing Dr. Chemali here in Norfolk va. He used to be at the Cleveland clinic but now has a neurology office hear with a full autonaumic lab. So far so good. I waited a long time to see him and hope he is worth it because i am in no way able to travel, financially or physically...=) fingers crossed. My ttt and q sart are tommorow...yuck =p
  22. Thx Looney, Ithink ill try as long as i can but i think it would be better to take one than end up with a massive asthma attack and in the er....fortuanatly im already off all other meds for the time being. Too many side effects so that worked out. I couldnt imagine cold turkey off everything i was once on all at once =o
  23. I thought the same thing E. I dont sweat hardly ever except for a few minutes before its critical, ill start sweating like crazy then i know im gonna hit the deck one way or the other. Its kinda too little too late nervous system but thanks for the sentiment. Lol
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