new and scared
 

Hi,

I was just diagnosed with myasthenia. My Doctor called today saying the blood tests came back and it looks like MG. I am so scared!

It all started about nine months after I had my son (only child). I have arm/leg weakness and double vision every now and then. I have had double vision off and on since I was 13 (I'm now 29), my eye Doctor has always said it was a muscle imbalance, not sure if it was always a sigh MG. It comes and goes, I'll be strong for a couple of weeks then for a couple weeks the weakness will return. It is more of an annoyance right now, not anything dibilitating.

I workout lifting weights three times a week, it's weird because I can lift 200 pounds on the leg press with no problem, but when I try to do a squat I can't do it (I fell a couple of months so squats aren't on the routine anymore). Does anyone know if lifting weights can speed up the muscle/nerve problem? I have lifted weights for the last 6 years and can't imagine not doing it anymore!!

Do you know if it will just keep getting worse and worse? I do not have the eating/breathing/heavy neck problems, but are those things that are going to happen with increased weakness? Sorry to be asking so many questions. My Doctor seemed like he was kinda annoyed when I tried to ask questions.

Also do you know if there any natural remedies/herbs/vitamins that help with the problems? It looks like there is no way to get around taking prescriptions, but is there anything natural to take, and/or any diet changes that have helped any of you? Not sure if it has anything to do with it, but it seems when I get at least 90 grams of protein, and keep processed foods out I'm stronger.

Thanks!
Kristy

Hi Kirsty,
Welcome to Neurotalk. First of all, don't panic - MG can actually be controlled quite well through medication and self-monitoring. Your symptoms do sound like pretty classic MG though - especially your fall weight-lifting.

You asked about weightlifitng - as far as I know it will not "speed up the problem," however when you lift weights you are essentially fatiguing your muscles really quickly through repetetive movements so there probably better ways to build and maintain your strength. The most important thing is that you monitor yourself and don't push too hard. You can really wear yourself out for the follow day too. I'm a member of a MG workout support group on facebook you might want to check out too.

I keep a detailed diary of all my physical activities and how I'm feeling everyday which has given me a whole bunch of insight and lets me give my neurologist really detailed information. In fact, my diary alerted me to something which might help you with your food question. I noticed that when I wasn't working for long periods - I'm a teacher, so I;m talking about summer holidays and Christmas breaks - I was always feeling worse and falling more. It seemed so weird because I was doing less and suffering more. Then I realised that during the normal school day I eat a banana every morning and one at playtime, but when I was home I wasn't eating any. Immediately I added a potassium suppliment to my diet and continued eating bananas. I noticed a difference straight away! Bananas are my wonder food!

You also asked if your symptoms would worsen - there is no easy answer for this. We are all so different. My neurologist thought my MG would be able to be controlled by daily doses of Mestinon and would stay the same, but about two years ago my symptoms started to get worse. My husband was a GOd send during this time and helped me with all sorts of things, including carrying me up our stairs if needed. I've been on steriods and azathioprine now for almost a year and I'm back to feeling great! There is such a huge range of medical options that sometimes it just takes time to figure out what works for you!

I hope some of this helped. It's great that you asked so many questions - that's what we are all here for, to learn from one anothers' experiences. Good luck with everything!
~Kathy
Sorry, I can be a bit long winded at times!;)

Thank you so much Kathy!! Your imformation is really helpful. I like that you are long winded!! Just trying to find out as much about MG as possible.

I worked out today and went lighter, 20 reps of lighter weights instead of 10 reps heavier. The facebook support group sounds good, I'm going to check that out. Can't imagine not working out, I feel stronger for the rest of the day when I do..

Yay for bananas!! Glad you found your wonder food!! :winky:

I really don't like taking prescriptions, but that is something I'll have to get over. My Doctor wants to put me on steroids first off. It's kinda upsetting because I just lost over 30 pounds and actually started feeling good and now it may all come back. I'm going to add some potassium and try to change my diet, maybe that will help some so the medication doses will not be as high, keeping my fingers crossed.


Your husband sounds awesome! That is so great you have someone there to support you!!

Thanks again!! I'm going to go eat a banana!!

~Kristy

Hang in there!
 

As Kathy said, we all have different symptoms/problems due to MG - some people have vision problems, others (myself included) have ALL the symptoms of MG....not fun! Please be careful and do not wear yourself out. Wokring out is good to a certain degree, but DO NOT push it! Also, be vigilant about washing your hands and stay away from sick people (as much as possible) b/c that can make you very sick, very quickly.

Steroids are a necessary evil - granted, you MAY gain weight and have the other few side effects, but they are WELL worth it. I know in my case, they truly saved my life - no joke. I was in a a crisis, though, something that not all people with MG have.

It sounds like you take really good care of yourself - keep it up and good luck!

Take care!
Erin

My neuro said weight training was about the worst exercise for MGers...different doctors say different things. You really need to talk to your own doctor about this. Steroids are sucky...but they help. You'll have to play with your meds (under your doctor's advice) to get everything right for you. Just work closely with your doctor...and remember to rest when needed!

Hi Kristy,
Potassium supplements (artificial or natural: bananas, almonds, nuts, oranges, dry apricots…) are useful when you are under steroids because one of the side-effects of steroids is to cause a reduction in the blood potassium level…
Maurice.

Erin ~ Thank you for your encouraging words! I'm sorry to hear about you having all the symptoms, I'm glad that the steroids is working for you!

GaBelle1 ~ I am going to start doing really light weights until I talk to my neuro, and the treadmill will be my main source of exercise. Thank you for letting me know about the warning! It's not worth making it worse..

Maurice ~ Thanks for the info on the steroids! I'm not on them yet, but if my Doctor puts me on them I'll go to the vitamin shoppe and load up on some..

Thank you all for your words and advice!! It helps with some of the fear of this disease. I've tried to talk to some people I know in the medical field and none of them know anything about it. You all are helping me a lot!!

I was just reading in a natural book about soy lecithin being good for MG.

On a website for nutritional supplements an article talks about a problem with it if you are allergic:
"More and more people have been using soy supplement as part of their daily food supplement. But along with this popularity comes the number of soy lecithin allergy cases reported. These allergies are caused by an oversensitive immune system such that exposure to certain allergens such as the ones found in soy lecithin, lead to a reaction that involves the release of huge amounts of antibodies." Then it mentions the signs to tell if you are allergic..

It lists as one of the benefits improved physical performance and muscle endurance.
Has anyone heard if lecithin helps or not?

I'm still not exactly sure what MG works..

Hello Kristy, welcome to Neuro Talk I see you have found your way to the MG forum, you will find a lot of nice and helpful people here at NT, do not hesitate to ask any qeuestions if I may be able to help. here is a link to a social forum, many members from diff forums visit and add to the fun there in the social forum, again welcome to Neuro Talk

http://neurotalk.psychcentral.com/forum35.html

I know how you feel!
 

Hi Kristy,
I'm newly diagnosed too. It is pretty scary. This support group (hi everyone) has been a great resource for me. I go from being really tough to being really scared sometimes in the same day - but the bottom line is that this disease, while it can be scary - is usually controllable.

Hang in there and don't forget to ask for help when you need it. My friends and family have been a huge source of comfort and practical assistance.

i had the same problem re doctor not having time for questions. That is really a bummer. But you can get lots of answers to general questions online.

Take care!
:)
K

How are you?
 

Kristy,

How are you today? Have you started on any new meds? Any new news from your doc?

Things are great here! I got a lot of work done today and look forward to our new office space - we are moving tomorrow:D...........

As for me, I was really surprised with all the wonderful info neutro was able to provide about potassium, etc - I guess that's why I crave OJ and go through a gallon a day. It is amazing what the body can do and how it copes with our disease. For a while there I was craving fried egg sandwiches and whole milk all day long and a woman I met @ the Cancer Care Center here in SA said she craved the exact same thing when she was going through chemo - my hemo told me I needed MORE calcium and vitamin D, so I take supplements every day, in addition to iron - apparently my body doesn't "store" iron properly - no idea why, so I go in for blood work every 2 weeks now. Hopefully that will change soon,as I am still scared stiff of needles:eek:

I know this is kind of a personal question but I hope you don't mind my asking; how old are you? Do you have kids? I am 34 and have a gorgeous 16 yr old who is the love of my life! My hubby has also been truly amazing through this whole thing..........I was diagnosed in March and had my thymus removed in April. The whole thymectomy thing is kind of a hot button issue, but @ the time I had it I was just so ready to be well again that I decided tohave it removed - they had to do a transsternal thymectomy b/c there were hundreds of little spots on my lungs and they wanted to biopsy them while they had my chest open - not fun, but I got over the pain - though I do occasionally take pain meds when it really hurts..........

Try and keep a positive outlook. I know that is really hard, but we need it in order to look @ the bright side. We have enough to worry about without seeing the negative in this whole MG thing. People ask me all the time how I can be cheerful when I have an incurable disease and I reply "What are my options?". My dad had a stroke 5 yrs ago and it has just made him so bitter. I try and remind him that it could be a lot worse, but he isn't ready to hear that yet - hopefully he will be in the near future, cuz' he was once so witty and funny and now he is a shell of his former self - self pity just doesn't pay off. Don't get me wrong, there are plenty of days when I do wallow in self pity, but then I eat some chocolate, cry and get over it:D..........

Plus, @ the Cancer Care Center here in SA my nurses reminded me that people with positive outlooks are usually healthier than people who don't have one:D

Sorry for going on and on - when you get some time let me know how you are!

Take care!
Erin:D

K ~ Sorry to hear about your doctor not having much time. This forum is a lot of help though. Friends and family are very much help, but it is nice to come here and talk with people who are having the same things going on and understand. Thank you for your encouraging words!

Erin ~ Today is going well. When you originally asked it was pretty bad, actually all weekend. I kinda pushed it and it bit me in the rear.. It seems like it has gotten worse since I found out about it, my mom says because I'm stessing about it. It's hard not to think about it, trying to though. So how was your move? I hope it was good.. Thanks for your positive words!

Hope you both are well!!

Kristy

Hi Kristy! I'm so glad to hear you are feeling better! I've been dragging tail lately too, though I'm worried that if I call my neuro I'll end up back in the hospital - last week I had tons of energy - this week absolutely none! I'm still trying to get our office together, but it's going to take a while - my hubby and FIL keep teeling me to take it easy, my sis keeps rolling her eyes........Family - what can you do?

Hi Kristi
 

Hey girl, sorry bout the diagnosis. It can be very scary and very much overwhelming. All of the what ifs----oy make you a bit insane in very short order.
My very best advice to you, take a deep breath. Sit down and let it sink in for a while. Don't try to "investigate" anything right now. Just give yourself some time to take it in. Talk with your family about it. Let them help you thru this initial shock.
Stay active in whatever way you are able. The key to any and all activity is to go and do but don't overdo!! In other words listen to your body. When it says hey girl need a break, don't push it. You can't push thru this anymore. Not just building endurance like the old days. Ya know, come on one more!! You can do it!! NO this is not the MG way. The MG way is ok, today I'll back off. Tomorrow I'll see how far I can go again.
The key to living the good life with mg is to listen to your body. Get lots of rest. Eat right. Exercise if/when you are able. Stress levels are a big no no. Have to keep those in line as much as that is possible.
Try not to look at the future of the MG to much. The way that we present and the "disability" we have varies greatly from one person to another. Many people are well managed on medications and hardy know they have MG. Others no matter what they get will be a mess. So the variables are so vast, one would be insane trying to figure that out. And let's face it we CAN'T figure out the future unless you are my friend Missy and have some kinda sick sense!! LOL
But seriously, I know how your world has been tossed askew. Let it all slow down so you can catch up again. Then move forward with your docs.
As to the prednisone, I see you are concerned about wt gain. That can be an issue. Again some no matter what they do puff up and that's their reality. Others you'd never know they were on it wt wise.
Eat a balanced diet, mind your sodium intake. Keep your fats and carbs in recommended ranges. Keep a close eye on your wt so if you do start gaining you can make necessary modifications to your diet to help curtail it.
Well, all this to say , hi and we are here!:hug:

How are you feeling?
 

Kristy,

How are you? I hope you are doing much better! I know it is hard, but you simply cannot push your body as hard as you did before. Easy for me to say, I know, but I do the exact same thing and end up feeling yucky for days!

My hubby surprised me with breakfast in bed today. He is so sweet! I'm taking it easy today - for the most part!

Hang in there and let me know if you need anything!

Erin:D

I knew nothing about MG and just did a quick search and found a success story from a lady taking Lecithin..she deals with MG.

Grape Seed Ex could help with the MG issues also. I'm searching that as I've been taking grape seed for going on 21 yrs. I do not deal with MG, but just learned a bit about it.

I just found this overview with pros and cons.

https://www.drvitaminsolutions.com/c...enia-gravis-01

Surprised to find this in my inbox today on Lecithin:

http://www.fourfoldhealing.com/blogs/news