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    Old 06-02-2014, 04:05 PM   #61
    Wondering189
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    Re: Odd symptoms

    Well I have my Neuro apt coming up and boy am I freaked out I'm scared for a diagnoses to be honest. Lately I've been waking up with very heavy eyelids where I have to go back to sleep and in a daze. They tested my b12 and folate again and it's still very high my b12 is 1000 which the range is [239-931] folate is 20.0 the range is suppose to be [>3.0] I'm still worried as to why it is so high. I read that having h pylori could cause this but idk. These Neuro symptoms and physical changes are just scaring me. What should I bring to this apt? Thinking maybe my labs, family history, list of symptoms as well. Ugh this is just scarring me because I think I have a certain illness :/ anyone feel the same? Checkers I sent you a msg too hope all is well. Sorry just feeling freaked out.

     
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    Old 06-03-2014, 06:44 PM   #62
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    Re: Odd symptoms

    Freaking out is what I do best!! I had a full blown panic attack today My burning tongue is just driving me nuts....it was getting better so I guess I got to hopeful, idk. I had a CT with diff scan of my neck to check on that lump. The Doctor said he couldnt find any evidence of anything in my neck and did not see what the orignal ultrasound showed. Still my tongue looks weird to me and under it is very swollen but all 5 doctors say it looks normal :/ I have to go for a CT on my kidneys and an MRI on my back.....I guess I have bone spurs and thinning disks (they did xrays) When do you go to your neuro?

     
    Old 06-03-2014, 09:47 PM   #63
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    Re: Odd symptoms

    I've had those panick attacks before! Not fun.. But at least you are feeling better my apt with the neurologist is tomorrow morning 10:30 so I am freaking out lol. I will update you. Have you seen a Neuro? And at least they didn't find anything bad but why are they checking your kidneys ? Wish me luck

     
    Old 06-04-2014, 05:41 AM   #64
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    Re: Odd symptoms

    I am sending u good thoughts! No I have not seen a neuro. Checking my kidneys because I have flank pain and blood in urine. I will check in on you today

     
    Old 06-04-2014, 03:38 PM   #65
    Wondering189
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    Re: Odd symptoms

    Thank you checkers! I've had blood in my ursine before but it was a bad uti. And I seem the neurologist today. He was soooo tall lol. Had to be close to 7ft! Very nice and helpful... Though all he did was the same strengthening test and coordination :/ which I did. He then ordered an MRI for me to check for MS or anything else...and also blood test for MG. he says if those come up clean then I will be seeing a rheumatologist.. So I guess we will see. I'm glad I am finally seeing the right people! But I thought he would have done the muscle testing EMG?! Isn't that weird?

     
    Old 06-04-2014, 05:05 PM   #66
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    Re: Odd symptoms

    Aw That's awesome...I checked here earlier to see if you had posted...I was worried when you didn't So glad you are getting somewhere....have you ever heard of the MS hug? They say it feels like you are being hugged around your waist....I have a few clients who have MD. I remember being at work and my middle finger on my left hand pulled down into my palm...it only lasted a few mins but it sure did freak me out...Thank God that has not happened sense. Hey how is your mouth? I had a ana done....wouldn't that show markers for autoimmune? I think I had a EMG or something for muscle....who knows. I don't have a UTI they have sent my urine off twice for testing and it comes back clean :/ I stay scared Im going to get oral cancer if my mouth don't calm down (one of my clients died of oral cancer not long ago so I think it plays on my mind) I go Friday for my MRI and CT so I will let you know...please keep me updated....don't lose touch lol

     
    Old 06-04-2014, 09:29 PM   #67
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    Re: Odd symptoms

    Lol I feel like we are in the same boat of worrying! But we have legitamate reasons! See if anyone else could last a day in our shoes! Lol. Sometimes I wish my husband would, lol. I feel like something is terribly wrong as well and it freaks me the heck out. I just want to know what is wrong, pray that there's a cure, and be healthy again and yes I feel comforted by having you here and updating each other staying in touch. Too many people I try to stay in touch with never get back to me! And I'm like omg! What happened to them lol... I always think something bad :/ well I hope all goes well at your apt keep me updated too it's crazy how you can have blood in your urine and yet it comes out clear! I remember there's a few others who had the same as well and it's a mystery too. I did have protein one time in my urine :/ I wonder if there's more people going through the same things? Oh and get this... Ok I'm noticing my right hip curves in more a whole lot more. Looks like a piece got dug out or missing. Ok I know that sounds crazy! I wish we were allowed to post pics lol. Well take care checkers, wishing you the best of luck seems like we're taking every test possible but it's all worth it and are you a nurse?

     
    Old 06-05-2014, 06:34 PM   #68
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    Re: Odd symptoms

    Like your missing a bone chunk or is it in your flank area? Get this....took the day off tomorrow for my CT and my MRI....my DR. office just called and its been canceled Seems the test needs to be reviewed by a few more docs to see if its necessary....Im bummed because I really want my left side looked at, not just xrayed....I have lots of little knots all over my ribs and side...nothing showed on the ultrasound or xray.....just ad it to my list of weird things. No Im not a nurse lol....I wish I were. I own a mobile Pet Salon I did Vet tech work for awhile but I doubt that counts lol

     
    Old 06-05-2014, 07:05 PM   #69
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    Re: Odd symptoms

    That sucks they cancelled it! Almost like its not a big deal when it is to us... I guess it's good that it could be nothing but I'm always thinking... This new symptoms has never happened before there's got to be a reason why.. And that's cool you are a vet tech that's gotta be fun. And it's not bone missing.. You know where your bikini or underwear covers on your hip? That's where my right side seems like there's less fat or muscle.. Looks weird! Lol. Who knows... Maybe my body was always like this and now I'm noticing it? Ugh this is annoying lol. Well hopefully the doctors can look over your results quickly! Keep me updated I got to pick up my antibiotics for h pylori tomorrow.. I'm hoping this has something to do with my tongue, the net said I could have silent reflux, but who knows. I am always hungry though, but I'm also still breast feeding and my son is only 7 months. I sure hope this all goes away :/take care and ttys

     
    Old 06-06-2014, 06:19 AM   #70
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    Re: Odd symptoms

    Strange new symptom lol.....goose bumps in strange patterns in random areas for no reason...about 3 times an hour for 3 days....looks kinda geometric in bands feels weird :/ I showed my Boyfriend he said "that looks weird" so atleast this is something he can see lol...

     
    Old 06-06-2014, 12:53 PM   #71
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    Re: Odd symptoms

    Wondering, the loss of subcutaneous fat can occur in lupus. It is from inflammation and atrophy, and is called panniculitis. It is not terribly common, but it is one more clue to note and if quite visible, you could take a picture of it, or better yet, show it to your Dr. People with autoimmune disorders also get weird things with their tongue, like deep cracks or geographic tongue.

     
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    Old 06-06-2014, 06:56 PM   #72
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    Re: Odd symptoms

    LadyBug,

    Could I still have a AI even if my ANA came back clear? My hair is also falling out again...ton of it. It stopped for awhile but its happening again, I have heard it can happen sometimes after surgery but Im so afraid I will be bald someday...my hair was soooo thick my whole life and it is now so thin...My thyroid has been checked 3 times recently

     
    Old 06-06-2014, 09:05 PM   #73
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    Re: Odd symptoms

    Thank you ladybud! You know what... When I had my Neuro apt. I had so many questions and then i sort of went blank! Ugh I was so mad at myself because these apts are hard to get early. Speacially before I leave this base. But I do have an apt with my gp this Monday for my high b12 and folate. The neurologist I saw also took a blood test to see if I have MG he said it measures antibodies...don't really understand that.

     
    Old 06-07-2014, 06:25 AM   #74
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    Re: Odd symptoms

    It is certainly possible to have AI disease and have negative blood markers. 4-5% of lupus patients have negative ANAs always. The other thing that happens is frequently the symptoms precede the ANA and other markers turning positive by months or years. My case is the extreme, I think, but I had symptoms for 10 years before my ANA turned + at only 1:40, which most Drs would have ignored completely. I thought I had lupus all that time, but just couldn't prove it. Hair loss is one symptom, but that can occur in iron deficiency too, so if you haven't gotten your blood count for anemia and ferritin measured (for stored iron), I would request that, and keep getting your ANA checked every 6 months or so during a symptomatic spell, as it could change or fluctuate between + and -.
    In MG there are antibodies produced to the receptors of acetycholine, a chemical messenger that transfers the nerve impulse to the muscle across the myoneural junction, a microscopic space between the nerve endings and the muscles, Essentially, that creates a deficiency of acetycholine to the muscle and the muscle fatigues easily and gets weak. Acetylcholine is like the energizer bunny to the muscle fibers.

     
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    Old 06-07-2014, 08:40 PM   #75
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    Re: Odd symptoms

    Very interesting! Thank you so much. Well I guess we will see what the blood test shows

     
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