Hey hon! I can tell we are going to become great friends! I truly appreciate anyone who loves animals that much - it shows a very tender heart!

People really do misunderstand pit bulls. If they could only see Lucky when she is being very gentle with me on my bad days, they would fall in love. What they don't realize is that most of these dogs have been abused horribly and have been killed when they don't win fights..... It sickens me!

Do you have any other family members around to help? It must be really hard having your wonderful hubby gone all the time. Mine works crazy hours just to keep us afloat. My bills have really gotten out of hand and we have fairly decent insurance.........

My son can't understand why I lie around on the sofa. If I'm in bed too long, he starts pounding on the door asking if I'm OK.......poor fella!

If you DO have to take the pred, your eyes will clear up. Almost immediately! Then all you have you have to worry about is bloating! I did really well for the first year - only gained 20 lbs and then gained a bit more. It will go away though. Once I'm down to 15-20 mgs I'll be back to normal!

It is great that you love your job so much! Dogs bring such joy!

Hang in there!
Erin

Hi, Kendra. Welcome. I am busy with my niece's wedding and family stuff right now, so I haven't been on the forum for very long at a time. I hope you get a diagnosis soon.

Have you ever seen those U-shaped neck pillows? I have actually driven with them around my neck. Or if you are sitting for long, they can help. A neck "brace" can help support those muscles too but is pretty binding.

Whether or not to take Prednisone is a tough decision. It's not only the weight gain but the chance of having diabetes, glaucoma, increased infections, loss of bone density, reducing the gel coating of the stomach and leaving you open to having a stomach ulcer, etc.

Stress didn't bring on my MG but anything that upsets the immune system can bring on an autoimmune disease. If you are under a lot of stress, if you have MG, it will make it worse. So will infections, heat, lack of sleep, surgery, etc. And some drugs. If you have MG, go to www.myasthenia.org for more info. Or www.mdausa.org

I know that the hardest thing for me having MG has been to not do what I want to do. Geez, I can barely do what I HAVE to do. But if you can accept the situation quickly, you can learn to live with it all. Just don't "push" yourself. MG will push back and it can threaten your life if you get much worse. It can make your breathing/chest wall muscles so weak that you can't breathe well.

If you can stay out of the heat and don't do too much, you might be able to keep doing dog walking. One thing I would caution you about, especially with those bigger dogs, is that your hand or arm strength could get worse so slowly while you grip onto a leash that you may not notice that it is bad; even to the point of not being able to grip the leash anymore! Maybe trade off between arms while walking them. Or walk them in a circle!

I hope you do get answers soon. The hardest part is not knowing. MG is tough but you CAN deal with it.

Annie

Gosh you all have given me some great tips! Some I have tried and some I plan to try as soon as possible. I am definitely going to mention the prism to my eye Dr. I had heard of some kind of crutch that people can have put in glasses that holds the lid up but it said sometimes it can cause dry eyes since you might not be able to fully close the eye.

You all have such amazing stories and I appreciate all the input.

Erin sounds like we have more in common than just MG, we also have a love for animals! I totaly agree with you that if people could see how sweet natured Pitbulls are they would fall in love! Mine are all big babies. My dogs give me so much love and comfort. I can't imagine my life without them.
To answer your other question about having other family to help me, my biggest help is my son. He helps me out tremendously. I have a Dad and sister in town but I don't think either of them understand what this is all about yet. I know they know I'm tired alot but don't realize how this disease works. My dad calls to ask how I'm feeling but I hate to worry him more than necessary. If it gets to a point where I can't keep up I know he would be here for me in a second.

I hope I answered all the questions everyone has asked.
Kendra

hi kendra,
i dealt with ptosis being misdiagnosed for around 2 years. i had an especially bad bout of flu that brought out other symptoms. my g.p. recognized the signs of mg and the rest is history. i'm almost totally asymptomatic with mestinon. 90mg every 4 hrs. my neuro started me on pred as part of a longer term treatment plan. not fun. from what i've gathered from the good folks here, almost every case responds differently. hopefully yours will be like mine and your symptoms will disappear with mestinon.

Hi Motorhead,
Thanks for the info. I am definitely hoping the Mestinon will help most of my symptoms. I am so glad you hear you are almost symptom free. That is very encouraging! Have you had your Thymus removed? I am terrified everytime I think about having mine removed. I will avoid that at all costs if at all possible.
Kendra

Hi Kendra,

welcome to the forum!!
As you can see its a very friendly place here, there are so many people full of wisdom and every one is very caring.

Hope to see you around
take care
Kate

Hey hon! I was scared @ the thought of having mine remove as well. It is a pain in the butt, but I DO believe it will aid in my remission.

As far as procedures go, it only takes about 45 min - 2 hours and having a great surgeon is key!

I was up and about 9 days after my surgery - hosting my niece's bday party -not smart, but it felt so good!

Hang in there!
Erin

Erin,
I am glad to hear it is only a 45 minute surgery. I am still hoping and praying I can get around that one. I think it is the thought of them cracking the breast plate open that makes it sound so horrible! I guess I need to toughen up a little and quit being such a scaredy cat. My chiropractor told me NOT to let them take my thymus because it would deplete my immune system more than it already is. Maybe that is where part of the fear is coming from too. I also have a blood disorder called Thrombocytosis (high Platelets) I am able to control it well with medication but have alot more infections than the normal person from that I believe. My mom had a blood disorder also and I know she was always battling sinus infections and colds. Her Dr. always said it was related to the blood disorder. I have noticed that alot of people on this forum are dealing with more than one disease. I wonder if there is a connection there or is it just coincidence? I am seeing the Nuero tomorrow and hope he will be able to let me know a little more of what exactly I am dealing with here.
Thanks,
Kendra

HEy sweetie! You are NOT being a scaredy cat! It IS big surgery, but your chances of remission will go up! The day of my surgery, I actually sweated through the sheets and cried until I was finally put to sleep - it took 3 times the amnt of meds to do so, so I know I was petrified! I also had about 20 family members there - just in case.....

You WANT your immune system depleted - otherwise you wouldn't be so sick. Our immune systems are all whacked out and like "super" immune systems - that's why we take pred and mestinon......

After the surgery, sleep is a REAL issue. You will want LOTS of pillows, as well as the heart pillow to clutch to your chest in case you have to cough or sneeze. I slept upright for months and can do so now if need be. Do not sleep flat on your back - too painful for a while - I was stuck on my back like a turtle! LOL!

You will prolly also be intubated - just in case. Don't fight the machine like I did! You may also be in ICU for a few days - just to be on the safe side! I brought my computer so I could watch movies all night long, cuz' you won't get any sleep @ all!

You dr and nurses will also want to get you up and around - so be prepared. You will also have blood thinner shots just to prevent any potential problems!

I know this is a lot to process, but I was totally unprepared when I went in. The pain will annoy you for a while, but morphine will be provided - as well as pain meds - so that should keep it to a minimum!

I also have high platelets. In fact, I was told by a nurse (who's daughter suffers from MG @ 17!) that it is very common for people with MG to have a high platelet count. I also swear my mom has MG - she has all of my symptoms but refuses to see a dr b/c she is so afraid of lab work! AUGH!

Hang in there, sweetie! It does get better!

You are much tougher than you think!

Love,
Erin