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#61 of 667 Old 10-12-2007, 04:17 PM
 
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Myasthenia Gravis "usually" starts in the face. And then progresses
to the rest of the body. If you have not lost facial muscle control
I doubt its Myasthenia.
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#62 of 667 Old 10-12-2007, 06:19 PM
 
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Re: Myasthenia Gravis

Believe me, I don't want it. I have some facial/trigeminal nerve dysfunction, I have ocular symptoms that make it hard to focus my eyes and make my right eye droop at the end of a day. I am going to request a screening for the binding anti-acetylcholine antibodies and rule this disorder out. It's just the process of elimination I guess. I hate the way it feeds my anxiety though.

Here's a question, does anyone here have fibromyalgia and not have anxiety and/or depression? Mine seems to arise from the feeling of being sick and having no idea about what to do for it and if it will ever go away.

-Laura
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#63 of 667 Old 10-12-2007, 06:54 PM
 
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Re: Myasthenia Gravis

Believe me, I don't want it. I have some facial/trigeminal nerve dysfunction, I have ocular symptoms that make it hard to focus my eyes and make my right eye droop at the end of a day. I am going to request a screening for the binding anti-acetylcholine antibodies and rule this disorder out. It's just the process of elimination I guess. I hate the way it feeds my anxiety though.

Here's a question, does anyone here have fibromyalgia and not have anxiety and/or depression? Mine seems to arise from the feeling of being sick and having no idea about what to do for it and if it will ever go away.

-Laura
Nope, I have both anxiety and depression. I hope your appointment goes well and that it is not Myasthenia Gravis.
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#64 of 667 Old 10-13-2007, 05:28 AM
 
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Re: Myasthenia Gravis

Believe me, I don't want it. I have some facial/trigeminal nerve dysfunction, I have ocular symptoms that make it hard to focus my eyes and make my right eye droop at the end of a day. I am going to request a screening for the binding anti-acetylcholine antibodies and rule this disorder out. It's just the process of elimination I guess. I hate the way it feeds my anxiety though.

Here's a question, does anyone here have fibromyalgia and not have anxiety and/or depression? Mine seems to arise from the feeling of being sick and having no idea about what to do for it and if it will ever go away.

-Laura
Please let us know how it goes w/ your appointment. I'm sorry
about the probs your having.

On the subject of Anxiety and depression, I used to have panic attacks
really badly, i saw a naturopath who prescribed some high potency
B complex glandulars, now i usually only have them if I consume
caffiene, otherwise almost never. I would take it back in a heartbeat
than what I am dealing with now...

I used to have very bad MS -type symptoms that went away and
then reappeared as this. Like I said I truly believe that I have Lyme,
i will be ordering my Lyme kit soon. I highly recommend everyone
w/ Chronic Fatigue,Lupus, Fibromyalgia, Multiple Schlerosis and
even Lou Gherigs disease to get tested for Spirochetes by a lab that
specializes in Lyme. I will report on what my results show.

i hope all is well and the test comes back a strong negative.
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#65 of 667 Old 10-15-2007, 03:54 PM
 
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I just feel like crying today.

I'm just so tired. I got DD up around 10 this morning (a huge battle with her!) for a HS activity. It's in a new location, not a place I've been to before. I used Mapquest for directions. It took me 20 minutes to drive most of the way there. Then I spend 45+ minutes circling around the town trying to find the damn street I needed to turn on. Finally, I gave up and drove the 20 minutes home. So that was nearly an hour and a half in the car with a full bladder. I'm completely wiped out and we got nothing of value accomplished today!

Now DD is bored and wants my help making doll clothes and I just can't do it. I'm too tired to think straight, but if I can't really nap when I'm supposed to be doing stuff with her.

Forget about doing math or Hebrew or decluttering the house so we could actually work at her desk. Oh, and I'll need to make dinner at some point this afternoon. And I need to call some doctors and go food shopping and get vaccine records for DD1 (stupid school lost them) and I could have done much of that today if I hadn't spent close to 2 hours driving around doing nothing.

Ruth, single mommy to Leah, 19, Hannah, 18, and Jack, 12
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#66 of 667 Old 10-15-2007, 04:25 PM - Thread Starter
 
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I have a headache, dsd and dh are both home and I just want everyone to get the hell out of the house. :

Yesterday both kids drove me completely insane. They antagonized each other to the point where I could not work at all. While I was on the phone with a client they made so much noise I had to stop working, then they went outside and onto the neighbor's property where dsd managed to get her leg stuck in a crack in the lava. DS and I spent about 20 minutes extricating her and now she has a nasty sprain and all of us are scratched up. It's a wonder she didn't break her leg. We literally had to lift her and lean her back so she was in the right position to ease herself back out the way she went in. If she had been alone she would have stayed there indefinitely.

I am a nervous wreck and I know kids don't understand, but sometimes I wish dh did.

Does anyone else find that the least bit of drama just sends you through the roof? I swear it takes me days to recover from any extra stress.

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#67 of 667 Old 10-15-2007, 05:43 PM
 
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Sending you both hugs. I know what you mean about the least amount of stress sending you over the edge. It happens to me too, and then dh looks at me like "Really what's the big deal?" And I wish I could tell him but I don't know.
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#68 of 667 Old 10-15-2007, 06:02 PM - Thread Starter
 
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exactly. It's like you know rationally that it isn't such a big deal, but your body responds in such a way that it is a big deal.

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#69 of 667 Old 10-15-2007, 06:06 PM
 
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Yeah, like spending 1.5 hours in the car instead of 25 minutes followed by an hour to walk/sit/hang out and then drive 20 minutes home completely wiped me out today.

But I got a check from Social Security today! I can go re-open my bank account tomorrow, and then I can pay my bills finally!!

Ruth, single mommy to Leah, 19, Hannah, 18, and Jack, 12
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#70 of 667 Old 10-15-2007, 06:08 PM - Thread Starter
 
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woot! what a relief! Dh just got a call for some work tonight, so we got a break too.

If I can get my headache to fade I'm going to try to take some calls and make a few bucks.

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#71 of 667 Old 10-15-2007, 06:11 PM
 
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I want to say, I'm so grateful for this thread. I had an EMG this morning at the neurologists office and it ranks right up there with root canal on the fun-things-to-do list.

-Laura
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#72 of 667 Old 10-15-2007, 08:27 PM
 
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Yeah, like spending 1.5 hours in the car instead of 25 minutes followed by an hour to walk/sit/hang out and then drive 20 minutes home completely wiped me out today.

But I got a check from Social Security today! I can go re-open my bank account tomorrow, and then I can pay my bills finally!!

Congratulations! I know that feeling, it's like holding your breath for way to long and then finally after way to long you get to come up for air. I'm so glad you were approved.
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#73 of 667 Old 10-15-2007, 08:28 PM
 
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I want to say, I'm so grateful for this thread. I had an EMG this morning at the neurologists office and it ranks right up there with root canal on the fun-things-to-do list.

-Laura
Laura,

can I ask what an EMG is like? Are you able to get result soon?
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#74 of 667 Old 10-15-2007, 11:36 PM
 
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The EMG is a way for the neurologist to test your muscle strength and nerve conduction. He/She inserts a needle into the muscle and digs around a bit looking for the nerve. Once the nerve is found you contract the muscle and listen to the sound it makes and watch the conduction waves. The interpretation is done at the time of the exam and the results are immediate.

-Laura
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#75 of 667 Old 10-16-2007, 10:07 AM
 
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The EMG is a way for the neurologist to test your muscle strength and nerve conduction. He/She inserts a needle into the muscle and digs around a bit looking for the nerve. Once the nerve is found you contract the muscle and listen to the sound it makes and watch the conduction waves. The interpretation is done at the time of the exam and the results are immediate.

-Laura

Laura,

I'm so sorry you had to got througth this. It sounds like it was ver hard. I hope that the results are good.
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#76 of 667 Old 10-16-2007, 12:27 PM
 
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Subbing. I was diagnosed with fibro in 2000. The diagnosis was almost a relief - it explained why I felt so tired, sick and in pain for so long. Symptoms that I would never have associated before finally made sense.

This shift to the cold weather is so painful for me, and add in being sick and its just all the worse.

Wife of 1. Mom of 3. Conquering disability challenges, one achievement at a time.
 

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#77 of 667 Old 10-16-2007, 12:46 PM
 
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Subbing. I was diagnosed with fibro in 2000. The diagnosis was almost a relief - it explained why I felt so tired, sick and in pain for so long. Symptoms that I would never have associated before finally made sense.

This shift to the cold weather is so painful for me, and add in being sick and its just all the worse.
I understand about the cold weather, I live east and the dampness has been killing my bones and joints, I've been speanding as much time as I can in a hot bath with Epsom salts and lavander oil. I think I may even have to go tanning. Even though it is not something I really like to do, for some reason it makes me feel better.
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#78 of 667 Old 10-16-2007, 03:28 PM
 
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So I got out to the bank today and deposited my SSI check. The check was smaller than I thought it was going to be (around $2,000 rather than $3,000) but I'm not going to worry about it right now. However much they want to give me for back pay is still a heck of a lot more money than I had before.

I just need to be careful and only buy things my family actually needs. There's so much stuff I haen't been able to buy for a long time- new pot holders, new desk chairs, clothes for the kids- it's easy to go crazy and spend it all too fast. I also need to get myself a new mattress. i'm going crazy trying to research a safe mattress- one soft enough to support my sore body but without chemicals that could make me sicker.

Ruth, single mommy to Leah, 19, Hannah, 18, and Jack, 12
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#79 of 667 Old 10-18-2007, 10:12 AM
 
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Rant ahead:

I hate having this stupid illness. I am so sick of it stopping me from doing the things I want to do and making life so not what I wanted it to be. I know, I know things happen to everyone that they don't want, and usually I can keep things in perspective but today I just feel angry, unsupported, and misunderstood. I was mean to my husband who is already doing way to much, which I should be thankful for right? But no instead I feel resentful that he gets to do things I used to love and enjoy. Yuck. If this horrid rain could go away soon that we just great because at this point it has seeped into my bones so much that I don't know if I'll ever have a good day again.
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#80 of 667 Old 10-18-2007, 05:10 PM
 
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Ruth, single mommy to Leah, 19, Hannah, 18, and Jack, 12
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#81 of 667 Old 10-20-2007, 05:10 PM
 
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I was tested for everything under the sun, I actually came up positive for a problem that explains my symptoms, it truly feels like a miracle. I would urge others to be tested. I have a carnitine deficiency. Here is a link:

http://www.mdausa.org/disease/cd.html
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#82 of 667 Old 10-20-2007, 05:16 PM
 
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I too am getting some tests done very soon.

I will be getting a special Lyme test through Igenex soon.
I am not even bothering with the regular western blot that
you get at the hospital.

Cross your fingers for me!
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#83 of 667 Old 10-21-2007, 07:09 AM
 
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I have just been "diagnosed" but I am hoping this is just a residual lymes problem. I am so glad I found this thread becasue I thought I was going nuts. I cannot believe how bad the pain is and how badly my head hurts.

Subbing

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#84 of 667 Old 10-21-2007, 09:43 AM
 
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I have just been "diagnosed" but I am hoping this is just a residual lymes problem. I am so glad I found this thread becasue I thought I was going nuts. I cannot believe how bad the pain is and how badly my head hurts.

Subbing
It's hard to believe how much pain an illness that no one seems to know how to treat or even what causes it can create.
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#85 of 667 Old 10-21-2007, 10:35 AM
 
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I'm pretty tired and sore today. I can't even pinpoint anything that may have triggered another flare.

Ruth, single mommy to Leah, 19, Hannah, 18, and Jack, 12
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#86 of 667 Old 10-22-2007, 07:10 PM
 
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my mom had this. thanks for sharing and starting this thread! sarah
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#87 of 667 Old 10-22-2007, 07:14 PM
 
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I got a letter from SSI today explaining about my benefits. It seems that my initial check was for 4 months, not 6, which is why it was less than I'd been expected. But the money will still be coming to me- just not right now.

Ruth, single mommy to Leah, 19, Hannah, 18, and Jack, 12
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#88 of 667 Old 10-23-2007, 10:46 AM
 
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who diagnosed you all? My lymes came back negative so the positive test I had and the pain I ahve been attributing to it has been a "mistake" Also, is anyone on pain medication on a regular basis. I really feel I need to be simply becasue I am non functioning right now becasue of the pain. 8mg of Klonipin a day, topamax and prozac do nothing for the joints of the muscle pain. Sitting here is torture. And my primary care Dr told me to take Mucinex --HAS NOT BEEN HELPING!!! I am actully to the point where I want to order apin meds off the net as the Dr's don't want to help. I am frustrated, sore, and really just pissed that I feel so damn useless.

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#89 of 667 Old 10-23-2007, 04:47 PM - Thread Starter
 
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who diagnosed you all? My lymes came back negative so the positive test I had and the pain I ahve been attributing to it has been a "mistake" Also, is anyone on pain medication on a regular basis. I really feel I need to be simply becasue I am non functioning right now becasue of the pain. 8mg of Klonipin a day, topamax and prozac do nothing for the joints of the muscle pain. Sitting here is torture. And my primary care Dr told me to take Mucinex --HAS NOT BEEN HELPING!!! I am actully to the point where I want to order apin meds off the net as the Dr's don't want to help. I am frustrated, sore, and really just pissed that I feel so damn useless.
klonapin gave me headaches, and was never prescribed for my fibro, but rather when I was misdiagnosed years ago. I don't necessarily think prozac is going to help either. I don't see that anything you are taking is for pain, so how is it supposed to help?:

I would think even an arthritis formula tylenol would be more helpful than what he gave you. My mom actually got oxycontin and other high powered pain meds from her doctor, but I don't remember what kind of doc she sees. My shoulder, back and joint pain usually isn't that bad.

Are you seeing a doctor who specializes in fibro? I was diagnosed by my primary care doc a couple of years ago and then went to a fibro clinic within my plan. Right now mine is characterized mostly by fatigue and migraines, so I see a migraine doc.

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#90 of 667 Old 10-23-2007, 07:16 PM
 
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My point exactly!! And the moron doesn't want to see me until January. What type of Dr Specializes? Rhuemetologist? (sp)

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