[Maureen Gosz]

The Packers, Milwaukee Bucks, & the Badgers. I like the Brewers, but I can’t watch baseball! I really enjoy watching horse racing also. That’s on my bucket list, to see the Kentucky derby!

[Maureen Gosz]

Don’t make plans.

[Maureen Gosz]

My husband and I have told people we know about the gummies & gel, but there is such a stygma about using it. Alot of people think that taking 1 gummy is going to do it for them. You have to be consistent and take them every day. We have been using for years now. My husband, with such a bad back, takes 2 every night. I take 3 every night, and we have been doing this for years. You also have to experiment, if one doesn’t seem to do it, then move up to 2, ect.

[Maureen Gosz]

To John P.
Good luck! I hope it works for you!

[Maureen Gosz]

My husband and I both use a cbd roll on. The place we go to has 500 mg. or 1500 mg. It’s amazing. I have severe pain in my neck, and my husband has a bad back. It’s amazing! It works throughout the day, no side effects, and we take the gummies at night. My husband’s back was so bad, it would drop him to his knees. He did go to a chiropractor and has disc degeneration. After using the cbd gel and gummies, he hasn’t had any problems in years. Granted he pays close attention to what he does, but what a godsend! My neck gets so bad at times, and the gel is amazing. Even with coughing spells that I get, my ribs & chest get so sore, I put the gel on.

[Maureen Gosz]

In the past 5 years, I have had my throat dilated twice. I ended up this last time, to find out I had an infection in my esophagus. I was constantly clearing my throat and coughing. So, after 21 days of meds, the coughing and throat clearing hasn’t gone away. Needless to say, swallowing is getting very difficult. They took a chest x-ray, and told me that I have hyperinflation of the lungs and respiratory effort. Whatever that means. So, I go see another doctor for this on Tuesday, and go for a swallow study on Thursday. It just seems to be a never ending process. That’s why they have revolving doors on the clinics!!

[Maureen Gosz]

I take the cbd gummies or the delta 8 chocolate bar. Only in the evening though. It helps take the pain away in my legs and sleep a little better. I’ll drink a wine in the evening occasionally, but I usually add white soda to it. My doctors haven’t said anything about my use of it.

[Maureen Gosz]

Greetings!
It has just gotten ridiculously costly. Inflation hasn’t helped any. The cost of meds & Inflation, more is coming out than what’s going into the bank.
It is getting very stressful. I did do the IVIG until my insurance company decided they weren’t going to pay for it anymore. It costed $25,000 a month for those treatments. I did it for 4 months, and then stopped. I really didn’t notice any difference being on it. I could never afford it. It just frustrates me when a person works your whole life, and pays for insurance, and when you really need it, they just send you a letter saying that they aren’t going to pay. I never was a person that would run to the dr for any little thing. I’m 61 & my husband is 63. So much for enjoying your retirement years. I’m still working, it’s not easy, but I have to. My retirement fund that I did have is gone. I just wish this government would start taking care of the citizens that live here, & not everyone else.

[Maureen Gosz]

What do you look up to find out what drugs or supplements are bad for MG?

[Maureen Gosz]

I have no idea why this dr questions everything my other dr did. My other dr was young & up on everything. The dr I’m seeing now is old, & old school. He keeps bringing up the past, of when things were like this, or that medication used to be called this. Really? Do I need to know that? I want here & now.
I am going to the Medical Teaching College of University of Wisconsin Milwaukee.
I have a friend that is a quadriplegic that goes there, and highly recommends it, and knows the dr I am going to see, and says that he is really good. So, I have a wait till October, but I am excited to see someone that is highly knowledgeable. I am 61, and hoping that this will be the last dr. I have to see.
God bless.

[Maureen Gosz]

I was diagnosed with MG going on 3 years in August. Also seronegative. My neurologist put me on azathioprine, Mestinon, prednisone, and hyoscyamine, which helps immensely with stomach problems. He told me that I’m the best judge of how my body feels, and let me adjust the Mestinon myself. This worked out great. He really listened, and even had a colleague do the EMG test on himself, because he wanted to know how it feels! What dr does that!?
Well, he left, to go to Chicago. So, I am seeing the other neurologist that is in the office. Needless to say, no comparison. He is totally old school, and almost ripped my head off when he seen the other dr was letting me regulate my own meds.
“NO PATIENT SHOULD REGULATE THEIR OWN MEDICATIONS”.
Everything he says, he knocks down my old dr. He even told me he doesn’t think I have MG! He is cutting the meds I’m on. Then he asks me how I’m doing? How do you think I’m doing? I’ve been miserable since seeing you! The pain is so intense almost everyday, and the muscle spasms almost throw me out of bed. After the spasms end, which isn’t anytime soon, my legs are in intense pain. Then I can’t sleep. Great ride on the merry-go-round. So, he recommended I go see a dr at Froedert & The Medical Teaching College. He said that the people they send there, have had really good results. I wanted to say, well yeah, their not seeing you. What that tells me is that you suck. So, I can hardly wait to see a new neuromuscular dr. That will first be in October. I am on a waiting list, but either way, I don’t have to see my OLD dr anymore. Thanks for letting me rant. I hope that everyone gets the help they need, and to be blessed to have dr’s that listen to them.

[Maureen Gosz]

At 60 years old my lifes passions have changed. I was working with my horse to do endurance riding, when MG crept up on me. Being misdiagnosed for years ,I was finally diagnosed 2 years ago. Needless to say, I had to get rid of my animals.
I have always had a passion for flower gardening, which has expanded to many flower beds. I cannot do what I did in the past, being on my hands & knees for hours, digging, planting, ect…but I take lots of breaks. I cannot work at them all, so I work on one a day, or maybe longer. When I’m in my gardens, that’s all that’s on my mind at the time. It lets me escape from my disease for a time.
Also, living on a farm, people randomly dump their animals. Right now we have a big kitty that adopted us! He is a sweetheart, and an amazing mouser! He drops his kills for us at the back door! After our dog died, it’s been hard to try & get another, and then this guy shows up! God works in mysterious ways!

[Maureen Gosz]

Omg! Definitely low pressure systems. We are in a rut right now with rain, rain, rain! I feel like I got hit by a dump truck!
The heat & humidity are also major factors in how I feel.
Kelley, you are correct with indoor temps also. It gets extremely warm where I work,& it sure takes a toll. I wear a cooling scarf, but will have to check out the vest.

[Maureen Gosz]

Hello Amy, thanks for the info. I am in the process looking for a new eye dr. There isn’t a neuro-opthalmologist around here, so a regular one will have to do.

Thanks again,
Maureen

[Maureen Gosz]

Ari, sorry to hear about another crisis. Thank you for the tip on the eye mask.
What happens with an occular crash?

[Maureen Gosz]

My eyes have been progressively getting worse. I can barely keep them open. They are red, swollen, painful burning, & feel like there is a ton of grit in them all the time. Occasionally I have double vision, it is more blurry than anything,& I do wear glasses. I do cold compresses which give me relief for a short time. Does anyone else have these symptoms also?

[Maureen Gosz]

Anita, I love the analogy you gave of the energy of a sedated sloth! So true! Some days the fatigue is so bad, I could just drop where I stand.
I am 60,& was diagnosed in 2020. I grew up on a farm, & have a hobby farm, now, minus the animals. It just devastated me to get rid of my animals, especially my horse. It was getting to the point that I couldn’t even brush my horse without getting exhausted. Not to mention all the heavy lifting. I knew something was going on, other than my rheumatologist telling me it was arthritis! She finally referred me to a neurologist, who figured out it was MG.
Since diagnosed things surely went downhill. The fatigue, droopy eyes, painful legs, the throat with swallowing & talking, painful muscles around the ribs, ect..
I only work every other day, because it takes a day to recover from the day before! I work in health care, which has been bad this last year & a half. Being on immunosuppressants really had me on edge. My boss has been great, and gives me jobs where I don’t have to be around too many people.
But like so many of you have commented, about waiting to retire & do things you had planned. My husband is retired, & I carry the insurance, so I have to work till 65.
We enjoy car shows & swap meets, but those are attended depending on my symptoms. I tell my husband to go, if I feel I can’t.
Things have changed, that’s for sure. Try to have a good outlook, & just be thankful to wake up to another brand new day.
Take care everyone!

[Maureen Gosz]

Ok,followed what you said, but I do not see the boxes that you mention, friend, public or private message. 🤔

[Maureen Gosz]

I feel dumb. Did what you said, but still can’t find it. I’m done. I’ll just keep reading these responses as they come through. Thanks.

[Maureen Gosz]

I don’t have a clue how to private message. Help.

[Maureen Gosz]

Thanks! I’ll have to check that out.

[Maureen Gosz]

I’ve never zoomed. I don’t have a computer, just my phone. I’m not a tech person!

[Maureen Gosz]

Delta 8 THC is a psychoactive compound found in the cannabis plant. It has a slightly different chemical structure that makes it a lot less potent than true cannabis. It takes pain away, & gives relaxation. I take it in the evenings only. It seems to be the only thing that has worked for me. Daily I take 125mg of azathioprine, 300mg Mestinon, & 30mg of prednisone, for 2 years now, & do not notice any changes, not for the better. It gets pretty tiresome taking these drugs, with no effects whatsoever. I did do the IVIG also, with no results.

[Maureen Gosz]

Thanks Jodi! I was feeling pretty dumb with all the help people were giving me, & I still couldn’t figure it out! I don’t have a computer, just the phone. Thanks again! 😊