[tysondouglass]

Well. Ive sort of lost track of what symptoms may be my myasthenia or this heart/other issue im having.

Yesterday, I lifted weights, and eariler before that had felt a little weak and requiered a nap. But i felt okay after and decided to lift weights for about an hour..


This morning when i woke up, it took me 30 mins to shower because my arms were so tired, and to stop washing my hair three times. And writing this, my head and shoulders are getting weak, my eye is very sore, and tired, and when im not trying to keep it open very hard, it droops over my whole eye.

Earlier, i was having trouble breathing, yet it sort of went away throughout the day, i called my neuro, he doesnt think its my MG.
Yet i see him on monday, so i guess ill try to prove to him, it is.

I think hes just underestimating it, and i was plasmapheresis, for im weaker than id like, and my insurance covers it.

Its so annoying how they think its not my MG. I KNOW WHEN I FEEL TIRED, I have this disease. Not you, doc.

I just hope they can adjust my mestinon so it works..i dont find it doesnt, so i dont take it anymore.

Thanks for any help. Does it sound like MG sypmtoms to you? I was having a little trouble with dizzyness, and my esphogus muscles were a little tired earlier during lunch, but seem to have gotten better.

Thanks.

[AnnieB3]

Tyson, All you are describing sounds like MG. The dizziness could be low O2 or something else.

I wish neuros would take their patients up and down some stairs, with an oximeter, or go for a walk with them or anything but sit there on an exam table and declare they are fine. Maybe ask your neuro to see you "in action."

I am going to again bring up breathing tests. Anyone done those (the full ones with MIP and MEP) lately?

Have you had an overnight oximetry or sleep study done? Monitoring you in the hospital is not the same thing.

I think you need to be careful with neuros when you say "tired." Are you really tired, as in sleepy, or are your muscles weak? Or both? I know that sometimes I say tired when I really mean weak. But weak muscles make you feel so overall exhausted that I often reach for that word instead.

You need to give them as accurate a view of how you are doing as possible. Examples are helpful.

When do you see the cardio? Are you planning on seeing a pulmonologist? Frankly, that still is one of the stupidest things they haven't done. Did they do arterial blood gases in the hospital?

Why do you say Mestinon isn't working? If you are weak and you take it, do you feel better an hour later?

I'm just throwing things out there. It's up to your docs to figure all this out. And it's up to you not to push yourself so hard.

Annie

[tysondouglass]

Originally Posted by AnnieB3

Tyson, All you are describing sounds like MG. The dizziness could be low O2 or something else.

I wish neuros would take their patients up and down some stairs, with an oximeter, or go for a walk with them or anything but sit there on an exam table and declare they are fine. Maybe ask your neuro to see you "in action."

I am going to again bring up breathing tests. Anyone done those (the full ones with MIP and MEP) lately?

Have you had an overnight oximetry or sleep study done? Monitoring you in the hospital is not the same thing.

I think you need to be careful with neuros when you say "tired." Are you really tired, as in sleepy, or are your muscles weak? Or both? I know that sometimes I say tired when I really mean weak. But weak muscles make you feel so overall exhausted that I often reach for that word instead.

You need to give them as accurate a view of how you are doing as possible. Examples are helpful.

When do you see the cardio? Are you planning on seeing a pulmonologist? Frankly, that still is one of the stupidest things they haven't done. Did they do arterial blood gases in the hospital?

Why do you say Mestinon isn't working? If you are weak and you take it, do you feel better an hour later?

I'm just throwing things out there. It's up to your docs to figure all this out. And it's up to you not to push yourself so hard.

Annie

Yeah, i wish they would do that also...it would be nice. Im going to ask for plex. Because i just had to take another 2 hour nap, and im still feeling tired..
They did do an arterial blood gas and it showed i was breathing too much.
The mestinon does not help an hour after at all.

When i say im tired, i mean my muscles are tired, such as my shoulder, arms, lungs, eyes, etc.


Thanks.

[AnnieB3]

Okay, then use the word "weak" instead of tired. It's more accurate.

I'm concerned that you say the Mestinon doesn't work. How much do you take? Mestinon should "work" for anyone with MG.

Do you know what they meant by "breathing too much?" Did they say the ABG showed "hyperventilation?" If so, that means you are nearing a crisis, usually. It has to be taken together with the clinical exam, breathing tests and O2.

I think when anyone gets an MG diagnosis, they should be given an MG book for free. Or any diagnosis. Then you can read up and know all this.

Again, if you aren't doing well, don't wait for an appt. I hope they can figure all this out.

[rezmommy]

Tyson,
I have read many of your posts but have not responded to any. I would like you to know that I am older than you (38) and haven't been diagnosed that long (since Nov. 08) but I have learned one thing about MG.

What I have learned is that you have to know your body and your limits. Not what you were like before having this disease. Even with the best treatment plan in place, I don't think that any of us completely get back 100% to the person we were before diagnosis.
I remember when I was first diagnosed and knew nothing about this disease, some very wise people told me that I have to know my limits. It was not until months later that I fully accepted and understood this advice.

Prior to getting MG (my symptoms actually started in Aug. 07) I was Super Mom. I left the career world when I had my first child at 28. I did everything to make a great home for my husband, children and extended family. I volunteered at the school. Hosted every family get together. You get the picture.

Well when I started to get so weak that I couldn't carry my children or wash my own hair, I had a very difficult time. When I was finally diagnosed I thought that I would take the meds and carry on. Myasthenia Gravis does not work this way. I started on the meds and I was able to get out of bed and do things with my family again. Overdoing it (ie. washing windows, carrying things up and down stairs etc.) was something that eventually caught up to me and I have been in hospital for breathing/swallowing difficulties because of it.

I do lead a really good life now. I take my meds and go to the hospital for monthly IVIG treatments. I do not push myself to the point of surpassing my limits to get back to being Super Mom again, it's just not worth it.

I know that you are a bright young man who is on the brim of everything but please realize your limits. You can feel good and have a very satisfying life it will just go in a little different direction than you previously thought.

Tyson I'm not telling you to drag the rocking chair out but please realize your limits with MG. Take care ~ Melanie

[Aw3sk3r]

Tyson,

Those all sound like MG symptoms, and don't let the neuro talk you into believing they aren't! I run into the same problem! I feel terrible so often that when I feel good I want to do the things I used to like riding my bike, lifting weights, and horsing around with my kids. The next day or two I am fighting to breath and walk/work. Don't forget that lifting weights after a period of not working out can lead to muscle pain and weakness by itself due to muscle damage. Do what feels good but in the end us MG'ers do need to be sensible about our condition.

[mrsD]

I think you should discuss activity with your doctor.

It might be of benefit to get doctor ordered physical therapy, with a trained PT, who can show you how to get back into
acceptable movement, exercise in a safe gradual way, so you do not stress your MG status.

[Shari_W]

Tyson,
I am in agreement with everyone else that what you are describing sounds like MG symptoms to me. Nobody knows your body better than you, I don't care how many years of medical school they attended. Take it as easy as you can and don't push yourself. Rezmommy couldn't have said it any better. Heed that advice. I will keep you in my prayers and hope you get to feeling better real soon.


Blessings,
Shari

[tysondouglass]

Thanks everyone for your words they really helped. I choked on water last night so that's wen I decided to be my own advocate. I called my neuro at duke, who was on vacation so I got dr. Massey who is the leading doctor in myasthenia at duke. But she asked that I come in and get an emg. I got one and she saw that I needed it and ordered 5-6 rounds of plex I'm happy becaus. Advocating for myself and it worked.

Thank you guys for everything

[Shari_W]

Good for you Tyson! As the saying goes... You are our your best advocate (or something like that). I'm glad that you are getting plex and am hoping that you will feel better real soon.

Blessings,
Shari