Ken, there's not much to add really, we're all as different as it would seem, is MG. Yet, we do know for a fact that stress is one of the worst symptoms to exhibit along with MG - a classic Catch 22 if ever there was one.

Take care.

Peter

I've had MG for years and it took a while to get used to. Recently I started having chronic pain. Normal meds have too many bad side affects so I turned to Medical Marijuana. It not only relieved the pain but helped with insomnia and anxiety. Worth a try. You can get strains with mostly CBD and little THC (the part that makes you High or Stoned).

Hello fellow MGs,

How are you all doing?

It’s been a while since I visited. Each time I said I will be back sooner but life doesn’t often work the way we want.

Anyway Kenneth, sorry to hear you were diagnosed with MG. It’s not an easy disease to deal with but you can get through it. It will take a while to adjust to the idea of having it.

From my own experience the first thing is acceptance. Just like anything else, we need to accept the fact that this is our reality and then try to learn as much as possible about it. We also need to understand our bodies and limitations. The limitation part can be extremely hard if you are a very active person with a busy schedule and even worse if you are a caregiver like I am.

Most importantly though is keeping hope alive, knowing that you could go into remission, or even be healed, miracles happen all the time. My neurologist told me when I was diagnosed that there is no cure, I took what she said with a smile since I do believe in miracles. However, I also have come to accept the fact that I may never be cure and will have to live with this disease as best as I can and find a way to use my situation to help others.

Update on my MG

Since I was diagnosed in with both malignant Thymoma and MG, I continue to be tumor free. My next CT Scan is in July and I continue to pray that I will be ok. As for the MG, it’s been a struggle despite the medication.

I was on 60mg x 4 Mestinon and 125mg Imuran daily, however after a year of taking it (Imuran takes up to a year to kick in) I was struggling a lot so my doctor initially suggested increasing the Imuran but I honestly didn’t want to take anymore so she suggested increasing the Mestinon especially since the 60mg only lasted about 3 hours for me and less if I am very active. So now I am on the TimeSpan 2 X daily.

I couldn’t handle taking 120mg x daily of the regular Mestinon since I have to eat heavily in order to absorb it properly and I have gained over 40lbs since starting the Imuran and Mestinon.

The TimeSpan seems to work so far, mostly I think because of the increase dosage…but not as well as I would have like. Anyway, I am taking it 1 day at a time and will see her in July.

In addition to that I have Hashimoto’s and when I see my Endocrinologist in April I will discuss with her my medication dosage to see if that will help as well.

Unlike many I don’t have a problem with my eyes, just about the only area not affected, thank God, but I have it everywhere else (generalized MG). It took 10 years of struggling and a good cardiologist who decided to get to the bottom of my breathing problems to discover I had a tumor in my chest. From there my Thoracic surgeon, decided to send me for test after some questions. Thank God, he did before the surgery. Finding out I had MG was very much a blessing since prior to that I wondered if I was going crazy since everyone else including some doctors told me I was just stressed and nothing was wrong.

I often struggle to walk a block or 2, uphill and stairs are extremely difficult for me. I often have to stop half way going up 1 flight of stairs to rest.

Despite all this, I refuse to allow MG to keep me down. When I feel like I am going into a funk I stop and look outward at the world and all the suffering and give thanks that I am not worst :)

AK

Thank you everybody you are most helpful and easy my anxiety this disease is new and all the advice that I have received has been most helpful it's mostly the stress and the anxiety that's beating me up I know that it should not be this way I should accept what is happening and push forward with it and that is what I'm trying to do but it is extremely hard I have had an active lifestyle and now I am afraid of this crisis I'm pretty sure I have ocular mg but the doctor does say it could generalize

The man problem that I have is I don't know which it is the disease or cold that is kicking my butt I have a runny nose all the time and sometimes my ear plugs up I don't know if this is a symptoms of the prednisone that I take or it's part of mg but the sinus issue does not seem to go away and I'm always looking for a deep breath that seems to be the anxiety and when I can't get it

And when I can't get that deep breath I keep trying harder and harder which leaves me into anxiety I have to get past that and it's a real pain in the butt I've had anxiety attacks before

That it's the anxiety that's causing the issue thank you for all your help and advice I will stay active with this thread and try to get as much help and encouragement from you all as I can thank you again

Robt111, thanks for posting about your experience with medical marijuana, especially that it is possible to take a strain with more CBD and less THC. Although I don't need it right now, it is always good to have potential treatments for our symptoms.

On medical marijuana you don't have to smoke it you can buy the CBDs and it liquid form and use it that way also comes in a little bottle with eye dropper you just put drops under your tongue

Thanks for the additional info, Ken. I was a teenager in the late 60s, and it is taking me a while to get my brain around the idea of medical marijuana. Marijuana to me still evokes bell-bottoms, tie-dyed t-shirts, and scruffy boys with long hair. ;-) LOL.
- Nan

Hi Ken welcome to the group!! I have had MG for three years now i am 56 years old and i have to say it can be hard to get a handle on. Mg is called the snowflake disease everyone has a different symptom.. It took me six months to get a hold on my meds i now take 30mg mestinon and 5 mg prednisone. What i have learned is to( believe it or not) is try to rest and remove as much stress out of your life. I am still active just a little less. You have come to the right place. Have no fear things will get better!!

REST REST And REST!!

So how would you know if you are going into a respiratory crisis I am very concerned for that the doctors and my neurologist have done a little test with my arms and legs and says it doesn't seem to be in my muscles but like I mentioned many times I have an anxiety issue as well and with that issue that deep breath that I want all the time is that a sign of muscle weakness or is it just in xiety if somebody could please help me with that would be greatly appreciated thank you and I know I seem to be a pain in the butt but I do have a lot of questions and any answers are most helpful

Hi,
My name is Kenneth also and have has MG for almost 8 years. I am 66 years old and had to make a few changes in my life and the way I feel about what I do. I have always did almost everything the way I wanted and to the best of my ability. I now do what I can and am thankful for what I can still do. I pace myself and try not to get too hot or cold. I take prednisone , Imuran and Mestinon for my MG .
My MG varies from day to day and I try not to plan to far in advance. I have generalized MG which started out as ocular then progressed.
I am also fairly relaxed about my heath as I have come to realize MG controls me and not me it. So I take my medications and do what I feel I can each day. The medications will probably cause other things you will have to deal with (like high blood sugar) but not things you can't work with. Right now I have a cold (I got around a lot of people at the Table tennis club , sure I picked it up there) . You need to be careful in public and try not to pick up colds and such as things like that will set you bad some. As far as a crisis is concerned
I believe it is a danger but as long as you watch your health and strength levels you should be fine. Be patient and be positive. Take your time to adjust. My main complaint with MG is that I am no longer dependable as each day is a new day. Holding down a job or planning something far in the future is hard to do. Try not to fight it, be like a wrestler using your opponents moves in your favor to get control of them.


I hope this helps , you are not alone

Hi Ken

My MG affects my chewing and swallowing and i have drooping in my left eye. When i first got out of the hospital my doctors warned me about a respiratory crises and pneumonia. I was always worried when i ate an drank that it would go to my lungs. My anxiety was up the wall!! When i was in the hospital i was intubated and i had a respiratory crises and it feels awful. You feel like you cant breath you start grasping for air,and you cant swallow! I basically had to learn how to eat all over again. Are you taking mestinon? I had a bad reaction and had to tone down the dose.

No l am not taking mestinon it did not work for me