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DEBBIEANNE1124's Photo DEBBIEANNE1124 SparkPoints: (97,698)
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3/5/12 10:27 A

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I am an aching lady today. I ahd a fall yesterday off a curb in the parkign lot of the hospital.. The best place to fall. LOL Because my IVIG was in Critical Care Unit Like ICU Not cuz i need it but because my nurse was doing that dept. yesterday. Luckily I ahve the same nurse all the time. Love her to pieces. If you ever hve to ahve this IVIG (a boost of the symptoms) meaning it ives a boost of relief from the symptoms do take a book. Mine tkes 6 hours. Saturday it was 4 but normally six.

I hear John Hopkins as you say si the best in the nation. My Neurologist is not an MG Specialist but he consults with John Hopkins on treatments.

I ahve been in touch with the MGFoundation and am with the NorthWest region. I'm waiting for them to put me with a supprot group in my areaa. I'm new contacting them. Just last week.

Oh yes and Prednizone that you are on is the evilest drug. I ahve not yet been put on it but i hear stories. It has also been a lifesaver for many.



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3/5/12 9:34 A

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Hi Debbie,

I had the CT scan and it came back normal. I found a local support group that meets every first Sat of the month through the MGFA website I sent you and it's been a big help. Was going to go this last Sat but woke up with flu like symptoms and didn't even get out of bed for the most part all day. There are some members of the group that have gone through the IV thing you're going through but I don't know much about it. I'm going to a specialist at John Hopkins next week and will ask about that. The group is farly big for such a rare disease. About 15 members. Some have had this life long. The leader told me it took them 16 years to finally get the diagnosis correct on her. Amazing. I feel lucky that it only took about 6 months. Also lucky that I live so close to John Hopkins (Baltimore is only about half hour away) since that's more or less the nations premier neuology hospital as far as I know.

Yea La Grande is pretty limited in medical options. Just about anything my parents need to have done that is even slightly above routine they either have to wait for a specialist to make the rounds or drive to Boise or some place in Washington.

From what I have heard no one knows what causes MG but there's a lot of research going on so maybe some good news will be forthcoming. I hope so.

Hope this note finds you well.

Paul

DEBBIEANNE1124's Photo DEBBIEANNE1124 SparkPoints: (97,698)
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3/4/12 10:44 P

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Paul

I ahve several friends who live in la Grande I was considering moving there recently to get away from the crowded Portland, Oreon area. I'm in Oreon City. But because la Grande is such a small town It was said there would be no MG care there if i were to mvoe. there is jsut one smallish hospital.

I see a good change so far in this IVIG treatment. My eyes are open fully and no double vision. One more day to go. I ahte IV's.

Have you ahd your Chest CT scan yet? Many people with MG ahve the CT scan to focus on their Thymus. Mine is normal so no problem there. If the thymus is enlarged or tumorous they opt on removing it. Some MG patients who have their thymus removed go in life long remission.

We still don't know what has caused mine it is a myustery.



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3/4/12 3:33 P

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Hi Debbie,

I also started noticing a ptosis in my left eyelid back in June last year and my Dr. also sent me to an eye dr as I was seeing double. They did the blood test and it went back and forth between my regular Dr., the eye institute, and neurologists and they finally settled on MG in Dec.

I tried the Mestinon but had to stop it as it really messed with my digestive track and have been taking fairly high levels of Predizone since Dec. and my weight has gone from 195 to 234 (down to 228 last week). With all that weight it's hard to walk without getting out of breath and found Sparkpeople on Friday to help me get my weight down. I'm amazed at the amout of information and tools available on this site.

Thanks for the welcome and hopefully we can share tips and successes as they come. There's a site you may find helpful at http://www.myasthenia.org.

By the way I live in Columbia Maryland and my folks live in La Grande OR.

Later,
Paul

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3/4/12 11:28 A

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Hello Paul
It's so nice to ahve you with us. I believe you and I are the only 2 in here with MG. You might click on my picture and on the top of my page click on Blogs. I write of my experience with MG. Not to freak everyone out but it's a rare disease as you probably already know.

I, too, was diagnosed late last year (November) After my daughter noticed my eyelids were not opening right. Optholmologist ordered blood work and it was positive for Myasthenis Gravis.


Yesterday, today and tomorrow I am having a 3 day series of IVIG treatments in the hospital. 1100 JL of the stuff. I won't realy know how it's working until after Monday or Tuesday but in january I ahd 1 treatment of 1800 ML And i felt jsut wonderful. I take Pyridostigmine for the MG symptoms. It's generic for Mestinon.

We will find that this disease is unpredictable. There's good strong days and weak days where we really feel like crap. My eyes with double vision were the only problem but my neuro thinks I am having breathing issues. who knows.

Hang in there and share your feelings. We have people here who are really supportive and loving.




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3/4/12 9:48 A

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Hi Debbie,

Unfortunately, yes I have MG. Diagnosed (finally) the end of last year. I'm trying to come to grips with the limitations i now have and the meds they have me on to try and manage it.

I'm glad this team exists so that I can share and learn more about MG.

Thanks,
Paul

DEBBIEANNE1124's Photo DEBBIEANNE1124 SparkPoints: (97,698)
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3/2/12 7:31 P

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Welcome PHGooder. I'm Debbie and I hope you don't ahve this dreadful disease.



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TWEETYKC00's Photo TWEETYKC00 Posts: 79,646
1/28/12 3:07 P

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Welcome to the team Lee! We are happy to have you here with us.

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1/27/12 11:18 P

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Hi Lee. What a pleasure meeting you. I'm so happy you joined.

We ahve friends here from Michgan. I believe I'm the only one in here with MG the rest are my very supportive loyal friends.

I was diagnosed in late December so not very long ago. My only Symptoms seem to be my eyes. My eyelids would not open. first my left and then the right. I ahve double vision in left eye and a light brown film over the eye. I may be starting to wear a patch soon. I take Pyridostigmine 2 tabs 3 times a day. It is generic for Mestenon. I get some releave from these peals but not long lasting. About 2 weeks ago I ahd a treatment called IVIG in the hospital an intravenous treatment 4 pint bottles that took 6 hours to go through me. it's got other people antibodies in it and mix with mine and it had great relief for about a week. this is an unpredictable disease and it can really sneak up on you and surprise you.

I see my neurologist on Feb. 2nd to discuss my next step.

I ahv one friend who ahs given me great support and information who lives in Chicago. she ahs had the disease for 40 years and still walks. I'm also on a yhoo team/group for MG patients.

I'm sorry about your DH and your mother being so sick with the bad back pain. Hang in there.

Best of luck to you!



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SHARON2014's Photo SHARON2014 Posts: 2,467
1/27/12 10:24 P

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Hi, I am Lee, from Michigan as well...Brighton. My 68 year old DH was just diagnosed this week. He is on Mestonin 60 3X day. Just the 3rd day, but the pills work for a while. He mainly has slurred speech and arm/leg weakness. Chext CT scheduled Monday and Weds we see the Neurologist who diagnosed him in the hospital. He was being observed for stroke, though we knew that was not happening as he has had intermittent symptoms for six months. I am also caring for my 87 year old mom who has severe back pain...I've been sleeping at her house..for over a week and going home during the day...since the diagnosis my DH is staying here as well as he is nervous about being home alone. This will be a journey learning about this condition. I am so very glad to have found this team as we will need all the help and support we can get.

Sharon (Lee) - Michigan

TRANSFORMATION MEANS SURRENDER

DO IT ONE.MORE.DAY.

No matter what you are wrestling with, if you are filled with conviction, anger, frustration and restlessness, it’s often because you keep doing what you WANT to do and resisting what you SHOULD do. Once you want peace more than whatever you are currently craving, change will happen and peace will come. PFTblog.com


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DEBBIEANNE1124's Photo DEBBIEANNE1124 SparkPoints: (97,698)
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11/30/11 5:20 P

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Lin, you can copy then past the team URL from the bottom of the page to any team you want to and tell them about it. I did go to leaders business team nd put the link there and talked of the team. No interest. I think I'm the only person on SP with this thing.



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TWEETYKC00's Photo TWEETYKC00 Posts: 79,646
11/29/11 8:24 P

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People can be invited to the team and a team leader can try to have our team put up as a featured team. I wish I could remember how to do that, you could go to the team leaders page and find out there.

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PICKIE98's Photo PICKIE98 SparkPoints: (273,295)
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11/29/11 4:15 A

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IS there a way we can let others know this team is here?

SIX YEARS SPARKING!!

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11/25/11 1:07 P

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Welcome to our new member. It's nice to have you with us. Are you an MG patient? or a family member of one? please introduce yourself and tell us a little bit about you.



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11/19/11 10:40 A

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LOL If only I made the treats homemade for her i might actually do that...



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11/19/11 6:30 A

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Share a doggie treat with Leone if you have to when yo take your meds.. you might have to paw-wrestle her for them, but at least you won't be hurling!! That is what God made saltines for Deb!!

SIX YEARS SPARKING!!

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11/18/11 9:37 P

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Thank you Kristy!



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TWEETYKC00's Photo TWEETYKC00 Posts: 79,646
11/18/11 9:30 P

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I have been praying for you and thinking about you and your appointment and am so glad that you are doing so well with the meds you are taking. I agree with Willow, try to have something, even some milk or a piece of toast before your meds, it could really help your stomach

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11/18/11 6:06 P

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Thanks Willow. I'll sure try that.



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WILLOW49's Photo WILLOW49 Posts: 39,332
11/18/11 5:15 P

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What wonderful news! I'm SO glad to hear that the med is working for you! I'm sure your girl, Leone, was so happy to be walking with you again; I know you were thrilled!
emoticon emoticon emoticon

Do try taking the pills after you eat something; I betting it will help, and it certainly can't hurt.

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I am not where I need to be, but thank God I am not where I used to be. - Joyce Myers

You never know how strong you are until being strong is the only choice you have. - unknown to me
DEBBIEANNE1124's Photo DEBBIEANNE1124 SparkPoints: (97,698)
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11/18/11 1:54 P

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Thanks Linda! You are awesome.

I feel actually 95% better today.

My eyes are OPEN! I asked my god last night to open my eyes Lord! and help me to see and he did. Left eye is almost all the way open now. So that makes 2 open eyes! I am so blessed.

It was so cool actually feeling the left eyelid flutter and twitch after being literally dead for over a month.

I have not walked Leone in this past month like normal. I take her to go potty and back in the car because i could not see. what was an easy walk for us was a huge chore. today we walked extra far extra steps and robert said I ahve my peppy step back.He actually told me to slow down. I said No. I can see.

I can take 2 of these pills 3 times a day but right now I am on 1 three times a day. I need to learn how to avoid the upset stomache. I had one right out of bed this morning even before coffee and i ahd a vomit like feeling that lingered. Ughhh. so perhaps food first...



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11/18/11 6:18 A

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Please remember, what COULD happen with our diabetes too..we Could lose a foot, leg, kidney,etc.. so far, so good with that..
learning the possibilities is very painful and scary, but we are positive..
besides, you are the luckiest darned girl I have ever met.
In the space of two years, you have gotten your diabetes under control, cochlear implants, a leader dog, new friends, lap band, flew on a plane(major accomplishment!!!!!!) and lost weight, got off some meds!!
Through all of this, you have learned, but also taught us, how to stay positive, how to persevere, and how to keep getting up every time you fall. LITERALLY WITH YOU!! LOL!

IMHO, this must be yet another health challenge that you are supposed to learn about and teach others about... just guessing, but that seems to be HIS pattern in your life.. one of his little angels to spread her wings of knowledge to others!!
As I write this, it makes perfect sense to me,, I am sure others will feel the same,, I am sad that you have his to deal with, but apparently WE are not in control,,,
Let's all, as a team and individually, plow through what we can learn, what we can share,and support Debbieanne and others who need help.

Edited by: PICKIE98 at: 11/18/2011 (06:20)
SIX YEARS SPARKING!!

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11/17/11 7:54 P

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I will save the other pictures and periodcally change them. thgey are all beautiful.

I'm back from the Neurologist appt. He did ome basic tests on me like pushing my forehead and telling me to resist lift mya rms 25 times to check my strength. I did well with those things but the eys suck. Truthfully I'm scared bad. He talked of what CAN happen. Other symptoms. Trouble swallowing, trouble breathing. The chest muscles collaps.
He's prescribed a pill for me to take 3 times a day He's hoping it will help relieve the symptoms. I ahve to have a breathing test done and a CT scan of my Thymus. For now it's the pills.



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11/17/11 7:25 P

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Yes, Deb, it is a pic I took a few years ago of Grand Island in Munising, Michigan. Lake Superior. It is just a portion of the Island..

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11/17/11 1:47 P

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How do you like the picture I up or downloaded to the team? It's contributed by Kristy and Linda. It is my favorite of the 4 or five I was sent. I love it. I am thinking it is Lake superior, Michigan. Am I correct?



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WILLOW49's Photo WILLOW49 Posts: 39,332
11/17/11 9:51 A

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Midland...I have a friend who lives in Midland! Small world.
Hi Linda, glad you have joined the team! emoticon

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Co-Leader of Emotional Eaters
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Leader of We Three Queens


"Every passing minute is another chance to turn it all around" Penelope Cruz in ' 'Vanilla Sky'

I am not where I need to be, but thank God I am not where I used to be. - Joyce Myers

You never know how strong you are until being strong is the only choice you have. - unknown to me
PICKIE98's Photo PICKIE98 SparkPoints: (273,295)
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11/17/11 7:51 A

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My name is Linda, I live in Mid Michigan, my stats are with my icon to the left. I am here to support friends, family and diagnosed MG patients. It is a somewhat uncommon disorder, but it is in every town and walk of life. As with any other team, we are here to support each other.


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TWEETYKC00's Photo TWEETYKC00 Posts: 79,646
11/16/11 8:42 P

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I'm about 1 1/2 hours north of Detroit in Bay City. It's by Midland, home of Dow.

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WILLOW49's Photo WILLOW49 Posts: 39,332
11/16/11 8:35 P

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So glad you have joined us Kristy! Where in MI are you from? My hubby's family is from Three Oaks (just over the border from South Bend), and he is a MSU grad. Congrats on being smoke free!

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Co-Leader of Emotional Eaters
Co-Leader of Binghamton Area Losers
Leader of We Three Queens


"Every passing minute is another chance to turn it all around" Penelope Cruz in ' 'Vanilla Sky'

I am not where I need to be, but thank God I am not where I used to be. - Joyce Myers

You never know how strong you are until being strong is the only choice you have. - unknown to me
TWEETYKC00's Photo TWEETYKC00 Posts: 79,646
11/16/11 8:24 P

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Hi there, I'm Kristy. I'm here to help support others that need help. I have been with sparks for about 2 and a half years now and am around halfway to my next big goal. I am from Michigan, a major dog/animal lover and Have been smoke free since around the time I started sparking here.

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DEBBIEANNE1124's Photo DEBBIEANNE1124 SparkPoints: (97,698)
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11/16/11 6:59 P

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Please introduce yourself in an introduction thread and tell us a little bit about yourself. Thanks bunches



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