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New To This Board. Diagnoised MG last year.

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Old 07-11-2018, 10:40 AM   #1
rosepointe
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Default New To This Board. Diagnoised MG last year.

Hi All,
I am new to this board and felt I needed to find a place for some support without reading too much that makes me go nuts. I was diagnosed in March of 2017 after having diplopia. At first they did not think that I had MG but when my eye started to close it was confirmed. I blood work also tested positive which I know is not always the case with others.
I am very suggestable and panic when I read things so I tend to be cautious with what I read and take bits in at a time. I feel I have excellent Dr's who are very familiar with and treat Myasthenia patients.
I responded well to Mestinon initially but started having speech symptoms in January of 2018. As with any autoimmune problem I know there will be good days and bad. And the more upset and fearful I get the more my symptoms increase. No surprise there! I also work out several times a week.
I keep active and we travel for long periods of time with "just in case" medication but I am finding after 18 months I might need some support options. I am a psychotherapist (pretty much retired now) and have spent my life helping others cope. My major problem is being able to manage the changes that happen without fearing the worst.
I just found this thread yesterday and felt that it might be a good idea to find a balance of support without feeling my life is ending. As with any illness (and this is late onset for me) one has a loss. I think I am now beginning to feel the loss when I was just adjusting to the changes before.
Thanks for listening.
Sue
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Old 07-11-2018, 04:05 PM   #2
kiwi33
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Hi Sue

Welcome to NeuroTalk .

The MG forum is very active so I am sure that you will get lots of support and helpful suggestions from other members.

All the best.
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Knowledge is power.
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Old 07-11-2018, 06:26 PM   #3
rosepointe
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Originally Posted by kiwi33 View Post
Hi Sue

Welcome to NeuroTalk .

The MG forum is very active so I am sure that you will get lots of support and helpful suggestions from other members.

All the best.
Thank you Kiwi. I actually found something very useful that my neuro-op did not think was related to MG on an Australian support page. I found several types of lights affecting my eyes and someone online was reporting the same issue. Just got back from Sydney.
Sue
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Old 07-11-2018, 07:46 PM   #4
AnnieB3
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Hi, Sue! First of all, your life is not ending!!! Your life has just changed. That does not mean your life will be awful! I have lived with MG my entire life and just adapt to what comes along. I'm almost 60, btw. I have had exacerbations and a crisis. I'm fine!!

I know my triggers. I know when I am worse by certain signs (O2 becomes lower, eyelid droop doesn't recover as well, muscles cramp or spasm, etc.). An oximeter is a useful tool to have, as long as you don't obsess over the readings every single day!

Someone I know is fond of saying, "Don't be scared, be prepared!" He didn't say that about MG, but that could be said about anything in life. Knowledge is power, and is reassuring. Although, you sound as though knowledge may make you afraid.

Knowing what makes MG worse is empowering. That way, you can avoid those things. No need to be afraid when you understand what makes a situation worse OR makes it better!

As long as you know as much as you can about MG, and you take good care of yourself (along with your neurologist and, hopefully, pulmonologist), life with MG should be fine! Not normal by any means, but fine.

A MG patient should get enough sleep, and nap if they are tired/weak during the day. We should avoid stress. We shouldn't get too hot. If we do, we should cool down right away (and then nap). You should know that MG can become worse after surgery or an infection. Again, anything that can make MG worse can be managed! No need for fear. You can handle this!

I'm going to get all philosophical. Why? Because fear is worse than the reality. If you find yourself fearing something, play the "what if" game. I mean, what if MG caused you to go to the hospital. Well, then the staff would take care of you. And to prepare the best for that, you can take a lot of steps to set yourself up for success!

• Learn about what signs to look for to determine if MG is worse (just normal everyday worse, an exacerbation, or a crisis).
• Seek out your neurologist (or an ER) if MG does become worse.
• Ask your neuro to write a plan for the hospital of what to do if you have an exacerbation or a crisis. Give that to the local hospital and have one in a wallet or purse.
•Have a medical alert card and bracelet for anyone so they know all of the basics about you (insurance, contacts, implants, allergies, medications and the dosing schedule, drugs you should avoid, etc.).
• If you have an increase in symptoms, call your neurologist for advice.
• Keep a log of new symptoms, to understand your normal and when MG is worse.
• If you do become worse, though not in an exacerbation or crisis, tell your family and friends! Knowing that they know can make you feel better, too! Or ask them to stay with you until you are better.

That is only a short list of what you can do to keep yourself in the calm, happy mode and not in a fearful one! You could also think of fear and love as opposites. Meditation helps to keep people in a calm, peaceful, loving state. I do that every day, and will never stop. Meditation helps that much.

Personal empowerment can help as well. I love Matt Kahn. He is funny, smart, and just talks about things in such a unique perspective. He has many videos that can help understand why we, for example only, turn to fear. There are so many things (when we're sitting around, weak as a kitten) that we can do to get our minds off of our situation, until we recover our strength!

You may also need to alter your workout program. Less reps, less weights, for example. I don't know how you workout though. Fluid exercises like a Total gym or swimming are great. Swimming keeps the body cool while exercising, which is good for MG. Have a fan blowing while you workout, if you can. Take a nap after exercise. There are many ways to stay in as good of shape as possible, but still adapt to MG.

I have known so many people with autoimmune diseases. The reasons for death—don't get freaked out!—is often not the disease!!! There can be complications from using immunosuppressants for many years. There can be other diseases that cause further complications with medications/side effects. But even managing all of that can be okay!!!

You know how if you think about one thing all of the time, more than likely, that one thing will manifest in your life? Well, think, "I'm going to be fine managing MG!" Then I'm sure you will be!

MG can be overwhelming, even for those of us who have had it a long time. But that's only because MG can interfere with doing things we want to do. If you adjust your perception (reduce expectations) of what is okay to do in life, then the new reality will be just fine.

I really hope this has helped, and not overwhelmed you. Just take things one step at a time. Use any tools necessary, like writing notes, that will help you. And don't be afraid to say, "NO!" if you are invited to an event that you know darn well that you can't handle. Socializing uses a lot of muscle groups and can really wear someone out.

I hope others here will give their perspectives. I'm sure you will have a good life with MG. But you do need to set yourself up for that success!


Annie
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Old 07-11-2018, 08:17 PM   #5
rosepointe
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Thanks you so much for those reassuring words Annie.

This has just been a rough few weeks as I had a diverticulitis flare and have been dealing with that as well. I am very open with all of my doctors and am thrilled with the team I am building. I have learnt from your posts however that I need to add a pulmonologist to the team and get a breathing baseline.

My doctors think I am doing well. I have an MG Neuro doctor who is good for me now but am always looking to see who is in the area if I ever need a consult. I am right by the Mayo Clinic is S Florida and suspect there are some others in the area.

I grew up with terminal illness so most medical situations throw me. I go to therapy to manage my fears but have been in a "what if" mode the past few days.

I have a wonderful husband, a good support system and relatives (one a neuro.)

What I think is really happening is that after a year of managing I am beginning to see and feel the "loss" of that loose term "normal" with the addition of more symptoms this year. This is not unusual when someone has an illness but I think that is what has been going on.

I am overweight and don't over do it with exercise and usually work out after my meds. Not doing weights. Water and a hip level elliptical. What is happening most frequently now is my speech in social situations and I am having to cut back at times, talk less (which is a big change for me) and say no more often. I do rest and see the need for it. It is all still new for me but I will look into the suggestions I have seen you post on the threads.

Thanks Again,
Sue
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Old 07-12-2018, 10:38 AM   #6
ErinBear
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Dear Rosepointe,

Hello and welcome to the forum! AnnieB3 always has such good advice. I'd add a couple more, if it's okay.

Since you live in Florida, it's a good idea to take good care of yourself in the heat. Probably you already do! Scheduling activities or chores for the early part of the day when possible, before it gets hot, can really help. Hopefully you have air conditioning, but I use gel freezer packs (normally for sore muscles) to help cool myself further if I feel hot in summer. They really help.

They say stress can make MG symptoms worse. Everyone has their own experience, but I believe it can be true. I try to make quiet, peaceful time every day, and that helps me. I also make sure I do at least one thing every day I enjoy. It does not have to be fancy or expensive. Maybe I take time to watch a beautiful sunset out the window. Maybe I listen to some special music I enjoy, or a favorite show on television. Maybe I have a nice visit with a friend, in person or by telephone. Maybe I go outside on my balcony and enjoy the flowers which are blooming in the morning sun! Maybe I enjoy some knitting or crocheting. But I think taking good care of ourselves in ways like this can help us get through our MG journey.

Sending best wishes to you from California,
Erin
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Old 07-12-2018, 11:11 AM   #7
rosepointe
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Quote:
Originally Posted by ErinBear View Post
Dear Rosepointe,

Hello and welcome to the forum! AnnieB3 always has such good advice. I'd add a couple more, if it's okay.

Since you live in Florida, it's a good idea to take good care of yourself in the heat. Probably you already do! Scheduling activities or chores for the early part of the day when possible, before it gets hot, can really help. Hopefully you have air conditioning, but I use gel freezer packs (normally for sore muscles) to help cool myself further if I feel hot in summer. They really help.

They say stress can make MG symptoms worse. Everyone has their own experience, but I believe it can be true. I try to make quiet, peaceful time every day, and that helps me. I also make sure I do at least one thing every day I enjoy. It does not have to be fancy or expensive. Maybe I take time to watch a beautiful sunset out the window. Maybe I listen to some special music I enjoy, or a favorite show on television. Maybe I have a nice visit with a friend, in person or by telephone. Maybe I go outside on my balcony and enjoy the flowers which are blooming in the morning sun! Maybe I enjoy some knitting or crocheting. But I think taking good care of ourselves in ways like this can help us get through our MG journey.

Sending best wishes to you from California,
Erin
Thank you Erin. Stress and mine is usually about medical issues (mine and my extended family) makes my speech horrible. I just got back from my gastro Dr and I am realizing that (which I knew as my niece has horrible RA since 23) autoimmune's effect everything in ones life. My pace is good and with support my neurosis and anxiety about MG will get better. I am glad I joined this thread.
Thank You
Sue
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Old 07-17-2018, 12:35 AM   #8
Jeff_MG
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Howdy,

As one who has experienced the benefits of a thymectomy, I encourage you to check it out. I had the regular (chest cracking) procedure, it took about 55 minutes. Obamacare was good for something after all.

My current status: generally symptom free. I went from 3 x 60 mg of mestinon daily (pre surgery), now about 3 years later, I am almost in complete remission. I take mestinon as needed, some days none other days about 30mg.

Good luck.
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Old 07-20-2018, 10:52 AM   #9
rosepointe
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Originally Posted by Jeff_MG View Post
Howdy,

As one who has experienced the benefits of a thymectomy, I encourage you to check it out. I had the regular (chest cracking) procedure, it took about 55 minutes. Obamacare was good for something after all.

My current status: generally symptom free. I went from 3 x 60 mg of mestinon daily (pre surgery), now about 3 years later, I am almost in complete remission. I take mestinon as needed, some days none other days about 30mg.

Good luck.
Thank you Jeff. Had MRI's last year before being diagnosed and they were all clear. Even the wonderful Thymectomy one. I did however test positive for the antibody which many do not.

Thanks for the suggestion.
Sue
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