Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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Kimmer26 02/01/2011

Hi Everyone!! I hope this note finds many ( if not ALL of you in good health!! ) I have been struggling myself lately and I have had MG for 10 years!! I have now been on bedrest for 2 wks because I broke my pelvis!! I'm only 36 yrs old and feel like I'm 80!! I also found out that I have SEVERE Osteoporosis!! Great One more disease to add to my book!! I would say living on Prednisone for the last 10 yrs it what caused it, I see my neuro on Thursday! Thought for sure it would/could only get BETTER with time.....UGH !

Also, been off of here awhile again because not only have I had a rough time, but my best friend ( MY MOM ) was diagnosed with Cancer, Stage 3 Lympohoma a month ago!

I TRULY believe that I have a Med bag the size of a duffle bag now!
I also wanted to let you all know that along with my MG journey I have found myself back and forth and ...in and out of the hospital SOOOOOO I started selling Thirty-One Bags! I also have a web and FB page if you would like to check it out. I basically have about everyone of these bags personalized just for me set aside for my trips to the doctor and one with all my meds in them!!! I have personalized some of my with things like "MG Survivor" " Daily Strength" "Meds on the Go" "First Aid" and so on......please feel free to check out my page and let me know if you are at all interested in a little something just for you!!! www.mythirtyone.com/kimmersboutique and on Facebook you can find my page at 31 gifts by Kim

Maybe I should look into doing a fundraiser for MG?? Any thoughts or Ideas???

Please take care and enjoy my fellow MG'ers!! God Bless :)

sudhish 02/02/2011

Hi,
I saw your profile and saw that your are on multiple medicines. I hope you are not taking all of them. It is good that they all worked for you. Osteoporosis is the major side effect of Prednisone if you take it for a long time.
My purpose of writting this mail is regarding Osteoporosis. If you were on Fosamax or its substitute you may be entitled to some compensation. This medicine is given to treat osteoporosis but caused fracture in pelvic region. I was taking this but stopped it once the news came out. Check the information and see if you can get some compensation.
We are already suffering with MG and now because of these type of medicines we have to go for another unwanted stress.

cgreens 02/02/2011

Sorry to hear about your mother. Both my parents are gone and my mother died before I turned two years old due to her selfishly instilled(brainwashed) religious beliefs. You and I are close to the same age. I hope you get better, and I agree with Sudhish that Prednisone sounds like the culprit of your problems. This is one of the many reasons I am trying to avoid Prednisone. Granted you've been on it long term and that is generally what is said about it...Hope you can do a fundraiser for MG. CrimsonJenn posted a MGFA walk on the other link to look at. I will be donating.

Best wishes for peace,

TJ

judithwilson 02/02/2011

Hi there,

Your website is great! So sorry to hear the sad news about your mom, but I have a good friend who has survived 8 years with lymphoma.
I am also on prednisone and am taking fosamex because I am so afraid of osteoporosis. I did ask my dr. about the risks of fractures to the pelvis and I was just started on imuran, with the goal being to slowly get me off the pred. But just read imuran increases your chance of cancer and I already had a malignant thymoma removed. So hard to know what to do!

You sound like you have a really positive attitude!

Good luck!

Judith

Kimmer26 02/02/2011

Thank you all for your replies!! I am VERY unsure wether or not I even want to start Fosamax! The dr told me today to go to the dentist first because it can cause you to lose you jaw bone!! I DON"T LIKE THE THOUGHT OF THAT!! I thought it was supposed to HELP bones not deteriorate them!!!
Judith....how long have you been on Fosamax? Any side effects?

YES.....I am on LOTS of meds.....2 page list of them! I do take a LOT, it's like a pill for a pill for a side effect of that pill.....that's why I started selling these bags.....I have a special tote personalized with "Daily Strength" that I carry my meds in!!!

I am weaning down on prednisone currently, BUT not sure how that will go, they want me off of it but in the last 10 years it has never happened....lowest dose i've been on is 5 every other day.

Why does it seem like I am the ONLY one on so many meds? Maybe I take too much and that's my problem?!

Thanks everyone! :)

judithwilson 02/02/2011

I was diagnosed about a year ago and started with high dose prednisone, which did improve my sympoms dramatically. I was started on vit. d, calcium and fosamex at that time. i already had osteopnia(sp?) before I was diagnosed. I just had another bone density scan ...it showed that my condition actually improved.

Kimmer26 02/02/2011

Did you mean diagnosed a year ago with MG?? I am SO glad to hear that you have improved!!! That gives me HOPE!! Did you have any side effects that you know of?

Thanks

deleted_user 02/02/2011

So sorry to hear about your mom, but I have fought bladder cancer since 1999, with four yrs in the middle of now and them ca free. I am now 2yrs clean again and am doing great. Please know that cancer is not a death sentence like in the past and your mom can get through this and be just fine. I found that people were afraid to even say the word to me, which just made it scarier. Help her to be positive about it all and I am sure by doing so it will help you to be less stressed about it too.

I also have severe osteo and believe it was from predisone long-time use. I tried all of the meds for it and nothing helped, but I found out, after many yrs, that I was extremely low in vitamin D. Maybe you can have your doc to a bld test and check it out. My doc now has me on vitamin D3 (2000mg) daily, can't wait to see if I improve. I am very very careful about falling (because of the mg it is easy to do). Just make yourself aware of if and be careful. It takes awhile to get in the mindset of always being alert to avoiding situations which could lead to a fall.

Hope you feel better soon,
Judy

judithwilson 02/02/2011

yes i had side effects from the pred. Insomnia, and anxiety. I have been very careful as far as eating a healthy diet and have only gained a few pounds. But I did get a redistribution of fat. Little fat pads on my shoulder and stomach. I just started to force myself to swim. I used to be a swimmer (before mg) Sometimes i want to cry,because there are days I can only swim 1 lap. But after 3 weeks, I feel slightly more muscle tone. I also cut salt out of my diet , so no blowfish face (maybe a tiny bit). I know the effects pred. has on your bones so I was thrilled that my numbers for the bone density test actually showed an improvement. I am hoping once the imuran kicks in, I can get off prednisone and fosterax ( then I only have to worry about the side effects of Imuran!

deleted_user 02/06/2011

Hi there, I was put on very high Prednisone back in 2004 when I was diagnosed with MG. I was also put on Azathioprine (Imuran). In 2005 I had 3 very small fractures and was put on calcium supplements including Fosamax. Unfortunately they did not agree with me. Since then I have really concentrated on my diet, natural supplements like organic plant minerals and colostrum, and weight bearing exercise. I have not had any fractures since. I know that not all myasthenics can do the exercise and I certainly couldn't when I first came home from hospital, but I was determined to be on as few meds as possible and to get off them asap. I am glad to report that I have slowly but surely gotten off all medications except 5.5mg of prednisone/day. In 2005 I was on 150mg 2x/day plus other drugs - so you can see I have come a long way. My MG was very serious with an unencapsulated malignant thymoma.
Are you well enough to do some weight bearing exercise to help lay down calcium on your bones? are you looking at reducing your prednisone any time soon?
So sorry to hear about your mum, the stress cant be helping your situation either.
Take care, Judie

Kimmer26 02/06/2011

Just wanted to let everyone know that I see my nuero the other day and he started me on Vitamin D2- 50,000 units!!! Plus take my Fosamax weekly along with ALL my other meds! I think I was soooo scared of something happening when I started Fosamax this morning that all night I had horrible nightmares where I felt as if I couldn't move or breathe----it just seemed SO real like I was dying! Not sure what the heck that was all about!!!

Judieb - what side effects did you get from fosamax and how many doses did you take?

Man I HOPE and PRAY things start looking up for me!! And all of you also!!

Kim :)

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