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Old 02-25-2009, 11:13 PM #1
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Smile A year ago today......

A year ago today, I was unable to get out of bed. A year ago today, I was unable to eat. My diet @ that time was 1or ensure (if I was lucky)! A year ago I was unable to breathe normally. I was unable to see - my eyes were literally rolling around in my head. I was unable to carry a gallon of milk. I wasn't able to do anything!

Now I am typing this after working all day, cooking dinner and taking care of my fellas.

My, how a year changes things!

Don't get me wrong - it has been a year of ups and downs, but overall I am just so thankful that I was finally properly diagnosed and given the right meds to treat MG.

The REASON I am writing this is to let others know that MG can be controlled. It is an awful disease, but @ least now it isn't a death sentence!

It does get better! For those of you that are new to the forum, welcome! This is the BEST site ever! There are so many wonderful, caring people who are always willing to lend a sympathetic ear..........it has been amazing!

I am going in for my new monthly "routine" - IV IG for 5 days and after that my neuro is going to reduce my roids to 50 or 55. I am sooooooo excited! I cannot wait!

I used to be so scared of needles, and I still do not like them, but am not a total wreck like I used to be.

IT DOES GET BETTER!

MG waxes and wanes. There are days when I can't get much done and then there are others when I feel AMAZING!

I never in my wildest dreams thought I would ever get sick. I wish I had never, ever heard of MG, but I AM thankful for the fact that MG has brought a new appreciation in my life for others. I never go to bed without telling everyone I love that I love them. I wake up every morning and thank God for another morning and again @ night.

Sorry for running on, but Mike and I were discussing this tonight.........

Erin

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Old 02-25-2009, 11:35 PM #2
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Quote:
Originally Posted by erinhermes View Post
A year ago today, I was unable to get out of bed. A year ago today, I was unable to eat. My diet @ that time was 1or ensure (if I was lucky)! A year ago I was unable to breathe normally. I was unable to see - my eyes were literally rolling around in my head. I was unable to carry a gallon of milk. I wasn't able to do anything!

Now I am typing this after working all day, cooking dinner and taking care of my fellas.

My, how a year changes things!

Don't get me wrong - it has been a year of ups and downs, but overall I am just so thankful that I was finally properly diagnosed and given the right meds to treat MG.

The REASON I am writing this is to let others know that MG can be controlled. It is an awful disease, but @ least now it isn't a death sentence!

It does get better! For those of you that are new to the forum, welcome! This is the BEST site ever! There are so many wonderful, caring people who are always willing to lend a sympathetic ear..........it has been amazing!

I am going in for my new monthly "routine" - IV IG for 5 days and after that my neuro is going to reduce my roids to 50 or 55. I am sooooooo excited! I cannot wait!

I used to be so scared of needles, and I still do not like them, but am not a total wreck like I used to be.

IT DOES GET BETTER!

MG waxes and wanes. There are days when I can't get much done and then there are others when I feel AMAZING!

I never in my wildest dreams thought I would ever get sick. I wish I had never, ever heard of MG, but I AM thankful for the fact that MG has brought a new appreciation in my life for others. I never go to bed without telling everyone I love that I love them. I wake up every morning and thank God for another morning and again @ night.

Sorry for running on, but Mike and I were discussing this tonight.........

Erin

This is so great Erin. I'm glad you are able to appreciate just living again! I felt that same thing as I went into my remission. The good thing about having this disease is that you find out just how special, loving and supportive your family, friends and, at least in my case, co-workers are. We do tend to take things for granted until we're threatened with loosing them, don't we. Thanks for reminding me of that wonderful feeling to strive for again! You're a blessing!
Becky
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Old 02-26-2009, 12:15 AM #3
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Default I needed this..

Thank you so much Erin. I'm having a hard time waiting for my biopsy results right now. I have this test that's supposed to show what's wrong with me and I have to wait for the results.

My weakness is getting worse. Now instead of just having spells, I'm just weaker in general. If I get up and try to fix a meal I need a nap. Ugh I hate this, I needed to hear that once I have an answer it will get better.

Any time I get up and walk or do anything I feel like my neck muscles are weak and I need to rest my head. Since yesterday if I turn my head to one side or the other, tilt my head down or lie on my side it feels like my throat sticks closed.

I see my primary doctor on Friday to have the knots cut on my stitches and I will tell him about that then to make sure he doesn't want to look into it further.

Since the beginning of the month I have been feeling like it takes more work to breath. I told the doctor that did the biopsy and he wasn't concerned. I know he heard me but he didn't even respond to it. I'm scared and I just don't know what to do. At night when I'm the most worn out I try to relax and go to sleep and notice that there have been several times where if I'm not concentrating on breathing I feel like I almost stop. I don't feel out of breath, I feel like I have to work hard to take a normal breath, not breathing any deeper or faster just working harder. Does that make sense?

I just can't afford to keep going to doctors and having tests and racking up the bills. If this test doesn't show a result I don't think I can even try to look for the answer anymore. I will just have to deal with whatever is wrong with me and go on with life. I feel like a whiner, most people aren't at the doctor one quarter of the amount of time that I am. I'm so sick of being looked at like it's all in my head, these doctors are starting to make me think that maybe it is. Maybe there isn't anything wrong with me as far as a muscle problem and it is anxiety.

I don't really feel like it's anxiety, I honestly believe that there is some kind of muscle disease here. I just don't know where else to turn. I feel like I've exhausted my resources and there's no where else to go.

Okay sorry to have ranted, especially when you are doing so well. That is so great that you are feeling so wonderful. Sorry again for the venting and ranting I needed to get that out.

I hope your IV IG goes well along with the step down on steroids. I hate steroids, I've had two different treatments of IV steroids (for three days each) followed by a two week tapper on Prednison but they think I'm allergic to steroids now so no more of that for MS flares anymore. I would hate to be on that high of a dose of steroids all the time, hopefully the step down will start helping with the swelling for you. Anyway, congrats on the good day, can't wait to hear how the IV IG goes and how you do on the lower dose of steroids.

Kristie

Quote:
Originally Posted by erinhermes View Post
A year ago today, I was unable to get out of bed. A year ago today, I was unable to eat. My diet @ that time was 1or ensure (if I was lucky)! A year ago I was unable to breathe normally. I was unable to see - my eyes were literally rolling around in my head. I was unable to carry a gallon of milk. I wasn't able to do anything!

Now I am typing this after working all day, cooking dinner and taking care of my fellas.

My, how a year changes things!

Don't get me wrong - it has been a year of ups and downs, but overall I am just so thankful that I was finally properly diagnosed and given the right meds to treat MG.

The REASON I am writing this is to let others know that MG can be controlled. It is an awful disease, but @ least now it isn't a death sentence!

It does get better! For those of you that are new to the forum, welcome! This is the BEST site ever! There are so many wonderful, caring people who are always willing to lend a sympathetic ear..........it has been amazing!

I am going in for my new monthly "routine" - IV IG for 5 days and after that my neuro is going to reduce my roids to 50 or 55. I am sooooooo excited! I cannot wait!

I used to be so scared of needles, and I still do not like them, but am not a total wreck like I used to be.

IT DOES GET BETTER!

MG waxes and wanes. There are days when I can't get much done and then there are others when I feel AMAZING!

I never in my wildest dreams thought I would ever get sick. I wish I had never, ever heard of MG, but I AM thankful for the fact that MG has brought a new appreciation in my life for others. I never go to bed without telling everyone I love that I love them. I wake up every morning and thank God for another morning and again @ night.

Sorry for running on, but Mike and I were discussing this tonight.........

Erin

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Old 02-26-2009, 12:41 AM #4
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Thumbs up HEy Kristie!

Honey, it is not in your head! It really isn't! I know what it is like to be afraid to fall asleep - not knowing if I would wake up. I know what it is like to have dr's tell me I'm "fine" when I knew I wasn't.

MY own FAMILY thought I just wanted attention or that b/c I smoked I deserved this. No one deserves MG. No one!

When I was finally diagnosed, I was depressed for quite a while and scared all the time. After my first plasma exchange I screamed @ my hubby for 3 days straight ( I was kind of tricked into going my Mike and my onc). After that, I started on Paxil and stated to feel less afraid. I kept my cell phone by me all the time and wouldn't leave my home without my meds.

MG is a tricky disease and unfotunately MOST docs have lost their humanity. If we were MEN complaining of these problems, I think we would be taken more seriously........

The breathing is a serious thing. I am stunned that your idiot doc didn't cae enough to do anything........most are a joke! I saw "specialist" after "specialist" to try and find out why I always sounded drunk, wobbled while I walked and had problems swallowing.....they all said it was TMJ (which I do have) and bad sinuses (which I also have).......

There has got to be some way to get your proper diagnosis. You can't give up!

My head and neck also gave me problems - sometimes I just could not lift it. Breathing was also a major issue. I thought I was crazy. Turns out, I was just really, really sick..........

It sounds like you really need another doctor. You need MEDICAL help. You need someone to LISTEN to you! You live in the DFW area, right? My neuro is here on SA.......he really is the best. If you come down and stay in SA, you are welcome to stay @ my house. We always have room for more!

Once you get your proper diagnosis, you will feel so much better! And you are not a whiner! It is scary when things that we once took for granted are now taken away from us and we have no idea why.........

My neuro's number is 210-949-1913. His name is Badreldin Ibrahim - and he listens! WOW! I gave him my list o' symptoms and he diagnosed me within 5 minutes!

Hang in there! Don't give up! This is NOT in your head! It isn't! You are weak b/c you are sick...............not mental

Let me know if you want to come down and stay with us.......We have 5 dogs and 2 cats and 3 kids - needless to say it is never dull here! But once Dr I gives you your diagnosis, you can find a great neuro in your area and get the meds you need!

Erin



Quote:
Originally Posted by nemsmom View Post
Thank you so much Erin. I'm having a hard time waiting for my biopsy results right now. I have this test that's supposed to show what's wrong with me and I have to wait for the results.

My weakness is getting worse. Now instead of just having spells, I'm just weaker in general. If I get up and try to fix a meal I need a nap. Ugh I hate this, I needed to hear that once I have an answer it will get better.

Any time I get up and walk or do anything I feel like my neck muscles are weak and I need to rest my head. Since yesterday if I turn my head to one side or the other, tilt my head down or lie on my side it feels like my throat sticks closed.

I see my primary doctor on Friday to have the knots cut on my stitches and I will tell him about that then to make sure he doesn't want to look into it further.

Since the beginning of the month I have been feeling like it takes more work to breath. I told the doctor that did the biopsy and he wasn't concerned. I know he heard me but he didn't even respond to it. I'm scared and I just don't know what to do. At night when I'm the most worn out I try to relax and go to sleep and notice that there have been several times where if I'm not concentrating on breathing I feel like I almost stop. I don't feel out of breath, I feel like I have to work hard to take a normal breath, not breathing any deeper or faster just working harder. Does that make sense?

I just can't afford to keep going to doctors and having tests and racking up the bills. If this test doesn't show a result I don't think I can even try to look for the answer anymore. I will just have to deal with whatever is wrong with me and go on with life. I feel like a whiner, most people aren't at the doctor one quarter of the amount of time that I am. I'm so sick of being looked at like it's all in my head, these doctors are starting to make me think that maybe it is. Maybe there isn't anything wrong with me as far as a muscle problem and it is anxiety.

I don't really feel like it's anxiety, I honestly believe that there is some kind of muscle disease here. I just don't know where else to turn. I feel like I've exhausted my resources and there's no where else to go.

Okay sorry to have ranted, especially when you are doing so well. That is so great that you are feeling so wonderful. Sorry again for the venting and ranting I needed to get that out.

I hope your IV IG goes well along with the step down on steroids. I hate steroids, I've had two different treatments of IV steroids (for three days each) followed by a two week tapper on Prednison but they think I'm allergic to steroids now so no more of that for MS flares anymore. I would hate to be on that high of a dose of steroids all the time, hopefully the step down will start helping with the swelling for you. Anyway, congrats on the good day, can't wait to hear how the IV IG goes and how you do on the lower dose of steroids.

Kristie
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Old 02-26-2009, 01:13 AM #5
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Default just a couple more weeks

I think the waiting is just getting to me. The doctor I normally see is so compassionate, I have a hard time understanding her, but she is great. She is not the doctor I saw for the biopsy though, I saw her boss.

Just a couple more weeks and I'll know the results. I think this test will say what is wrong with me, I just don't want to get my hopes up to be disappointed again.

Oh and I was wondering, when you have breathing problems, do you ever get a pressure pain in your head?

My primary doctor also cares, he knows it's something he just doesn't know what. That's why he has sent me to specialists.

I don't think we could really afford to keep looking for an answer if we don't get it now. The medical debt is tremendous already. That and I really don't want to go through any more tests. If a doctor is going to diagnose me they are going to do it with the tests that have already been done.

I want to thank you all again for being here. It helps so much to have someone who understands. My husband is so supportive and he tries so hard but I can tell he is scared too (poor guy has already watched me go through three near death experiences) and I know more about this than he does.

Okay I can't think right now, thanks again.

Kristie

Quote:
Originally Posted by erinhermes View Post
Honey, it is not in your head! It really isn't! I know what it is like to be afraid to fall asleep - not knowing if I would wake up. I know what it is like to have dr's tell me I'm "fine" when I knew I wasn't.

MY own FAMILY thought I just wanted attention or that b/c I smoked I deserved this. No one deserves MG. No one!

When I was finally diagnosed, I was depressed for quite a while and scared all the time. After my first plasma exchange I screamed @ my hubby for 3 days straight ( I was kind of tricked into going my Mike and my onc). After that, I started on Paxil and stated to feel less afraid. I kept my cell phone by me all the time and wouldn't leave my home without my meds.

MG is a tricky disease and unfotunately MOST docs have lost their humanity. If we were MEN complaining of these problems, I think we would be taken more seriously........

The breathing is a serious thing. I am stunned that your idiot doc didn't cae enough to do anything........most are a joke! I saw "specialist" after "specialist" to try and find out why I always sounded drunk, wobbled while I walked and had problems swallowing.....they all said it was TMJ (which I do have) and bad sinuses (which I also have).......

There has got to be some way to get your proper diagnosis. You can't give up!

My head and neck also gave me problems - sometimes I just could not lift it. Breathing was also a major issue. I thought I was crazy. Turns out, I was just really, really sick..........

It sounds like you really need another doctor. You need MEDICAL help. You need someone to LISTEN to you! You live in the DFW area, right? My neuro is here on SA.......he really is the best. If you come down and stay in SA, you are welcome to stay @ my house. We always have room for more!

Once you get your proper diagnosis, you will feel so much better! And you are not a whiner! It is scary when things that we once took for granted are now taken away from us and we have no idea why.........

My neuro's number is 210-949-1913. His name is Badreldin Ibrahim - and he listens! WOW! I gave him my list o' symptoms and he diagnosed me within 5 minutes!

Hang in there! Don't give up! This is NOT in your head! It isn't! You are weak b/c you are sick...............not mental

Let me know if you want to come down and stay with us.......We have 5 dogs and 2 cats and 3 kids - needless to say it is never dull here! But once Dr I gives you your diagnosis, you can find a great neuro in your area and get the meds you need!

Erin
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Old 02-26-2009, 02:31 AM #6
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Hi Erin,

Its great isn't it to be able to look back on how bad we were and how far we have come!!

I think back to just how bad I was when something happens, like my lips not working last week, when I tried to eat some yoghurt. I had to giggle, because its been so long since my lips didn't work I forgot how amusing it can be, you think you've succeeded in eating something, but its still on your spoon, or worse on your lap!!! Yep its good to look back...
and realise just how far I've come.
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Old 02-26-2009, 10:47 AM #7
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Hey Erin!

It is so great that you have came this far, and your doing so much better! I am so happy for you! And I'm glad you and your drs have a game plan now! 2009 is going to be a great year for you!!

Kristy
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Old 02-26-2009, 11:15 AM #8
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A year ago today I was told I either had MS or a brain tumor that looked cancerous, lol.

It's awesome you're doctors are finally on the right track and you're starting to get better! Gonna be a good year :P

Redtail, lol.
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Old 02-26-2009, 12:20 PM #9
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Hi Erin and everybody else,
Thanks for this - it was lovely to read, and I can totally agree! I've been diagnosed for 5 years but a year ago I was at my worst. Granted my worst hasn't been as bead as you, but that is probably only because they knew what was wrong with me and able to catch it sooner! A year ago I was in hospital getting my first round of IVIG, couldn't lift a spoon with soup on it to my mouth. I couldn't step up one step to my house without help. Couldn't do up my bra in the morning, needed help to do up buttons on my trousers or shirts, some days I couldn't even step into my undies without help (thank heavens for a patient and wonderful husband - it must have been like living with a 90 year old insted of a 29 year old, but he didn't complain once). I couldn't step into my tub to shower and when I did get in the shower I couldn't hold my hands up to wash or dry my hair. My stubborn side wouldn't let me give up and I only missed 4 days work during this whole period. I had to use a different entrance to the school to avoid stairs and had my lunch in my classroom to avoid going downstairs to the staffroom.

A year on and I can do pretty much anything i need! I'm swimming twice a week with the kids and doing loads of other activities. I can walk to and from work on my own most days and can go grocery shopping independently - this is stuff I thought I'd never be able to do again! A year ago I really thought life as I knew it was over, but I've come back so strong. The only worry I have now is that I'll relapse at some point. It would be really hard to go through that again! I guess we never know what will happen though, whether you have a condition or not, so I just take every day as they come and i am SO thankful.

Next challenge - having kids of my own.... I would so love to be a Mom but I'm worried about putting my body through everything. It's something my husband and I have been discussing a lot lately and we think we'll maybe wait one more year before trying seriously. I'm 30 now so that biological clock is ticking away! If it doesn't happen we'll probably try to adopt or foster kids, but we'd love to have a child of our own.

Happy thoughts to everyone! Spring is starting here in Scotland (the weather is turning and the flowers are budding) so i'm Spring cleaning my house, and my mind! I've been really trying to keep my mind focused on the good, and it's posts like yours Erin that help me remember just how much good there is!

Take care everyone,
~Kathy
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Old 02-26-2009, 03:04 PM #10
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Thumbs up Hey Redtail!

Yes it is! I think that I need to REMEMBER how lucky I AM instead of what I don't have.......life is too short to dwell on the negative!


The best part (for me @ least) is that we have each other to turn to. After all, who really understands MG unless they have it!

Did you tell your doc about your lips? How are you today? I loved your pics, by the way - they are my screen savers...........I bet you could sell them and make some serious money, since you have the "eye".........

Can't wait to hear from you!
Erin
Quote:
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Hi Erin,

Its great isn't it to be able to look back on how bad we were and how far we have come!!

I think back to just how bad I was when something happens, like my lips not working last week, when I tried to eat some yoghurt. I had to giggle, because its been so long since my lips didn't work I forgot how amusing it can be, you think you've succeeded in eating something, but its still on your spoon, or worse on your lap!!! Yep its good to look back...
and realise just how far I've come.
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