[imdan]

Hello everyone, gee wiz I should have saved my intro for this room. Maybe I will just paste it since it’s more relevant here.

Hi, my name is Dan, an avid outdoorsman construction worker type, who just returned home from icu being just diagnosed with Myasthenia Gravis and after 9 Plasmapheresis treatments to grasp the ability to breathe and swallow again. lol that seemed long winded.

Anyways, so far I am good spirited and feeling a little better although the diplopia (double vision) causes some reading/writing issues, there are benefits at times.

Anyways, the symptoms started abruptly about a year ago with double vision and have intensified to weakness fatigue, slurred /loss of speech, breathing issues, inability to swallow, choking, vomiting etc….

Now I am trying to learn what exactly I have, since my doc was not very coherent and transferred me to another I can’t afford. Had 7 in the hospital just found out no ins coverage. Ouch…

All I know is it’s “the rare type Myasthenia Gravis non musk”….. says there is not much paperwork on it, a bunch of trial and error stuff. Who knows? Been a week since my last plasma pher treatment and it’s a mixed bag. Doc says could need more tomorrow or next year?

Anyways, any and all help in understanding about it is appreciated.

I should note, I am a very strong Christian and either way it works out I am in good hands.

Second note, I had to add Plasmapheresis to my spell check. Must be rare. lol

Well it’s hard to get me down, and I am often a good leaning post so if I can be supportive or you need an ear. Bring it on. I do pray often and if you feel you need prayer ask away.
Dan

[suev]

Hi Dan - - welcome!!

Sorry to hear what you have been through. Sounds like it hit you pretty hard!

I've been one of the lucky ones who has been fully supported by Mestinon for the last 5 years - but there are many here who have also (unfortunately) experienced a crisis.

The most important thing is for you to learn the signals your body is giving you...and to LISTEN TO THEM. MG isn't something we can train our muscles out of! If you are having trouble talking - - don't just stop talking -- stop talking and take a nap! If your legs feel weak, sit down for MANY minutes...not just a moment. If you have trouble breathing - call 911 (especially since you have already had a crisis).

Don't expect any day (or even hour of the day) to be the same as the last day (or hour). Your body will teach you to listen to it. It's up to you how quickly you learn.

[AnnieB3]

Hi, Dan. Welcome to the unpredictable world of MG!

That's unfortunate that you had to spend time in the hospital, but it's the best place for you when things get worse. It's good that they knew what to do!

Would you mind clarifying what you mean by "non MuSK?" Were you positive for any antibodies?

The antibodies that there are tests for are the ACh or acetylcholine and the MuSK. There is the LRP4, but there's not a mainstream test for it yet.

So how would they determine you have "non MuSK" MG when that would mean not MuSK? Usually when patients don't have MG antibodies, they call it seronegative MG. And all cases of MG are considered rare.

Were you prescribed Mestinon? Do you believe your neurologist understands MG and what the treatment options are? It's best if you can find an MG expert to help you!

There is a lot to know about MG. It's a very unpredictable disease, because it is fatigable. The more you do, the worse it can get. It's sensible to alternate activity with rest. You'll find that sometimes you might need to take a nap. MG often doesn't give you a vote in that decision!

MG can become much worse in the heat. Try not to be out in it for very long. Some of us carry cooling packs when we go somewhere, just in case we get too hot.

Stress, a lack of sleep, surgery, infection, doing way too much, and other things can exacerbate MG. Also, there are some drugs that can make MG worse. For more info, go to www.myasthenia.org to read up on it.

Did your neurologist mention having a CT scan to take a look at your thymus gland? Some people with MG have either hyperplasia (more thymus than normal) or a thymoma, a tumor of the gland. So, please, make sure that you discuss that with your neuro!

If you don't already have a pulmonologist, you should really find a good one. They can check your baseline breathing and you can recheck if your breathing gets worse at any point. They do the regular PFTs but the MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure) are the tests that are more MG specific. They show how well (or not) you are doing at breathing in and out. And pulmonologists work WITH neuros in a hospital setting when an MG patient goes into an MG crisis, as it sounds like you had.

Always keep copies of any tests, too.

If you have any questions, please ask. There are a lot of experienced MGers here, happy to help!

Annie

[imdan]

Hi Anne and suev

thank you for the info. unfortunately, I have asked and get no answer what they mean by non musk. I will attempt to ask again but the way everything went down, I went into crises the same week all the Neuros were at a training so each day was another looking in on me, and than they compare notes with each other. As far as my tests, I have had cat scans mri's xray's, blood works confirmed high antibody s . They found no issue or tumor with the thymus gland. No I was not prescribed mestinon.

I had no insurance and have been trying to get insured for a while. Unfortunately I was in the gap on ssid to much for medicaid not enough for ACA subsidies, so I ended up going to hospital on a financial assistance program from hospital. at the mercies of the hospital network.

I finally get medicare in a few months, just trying to get there, bills are a bit overwhelming.

I have a specialist picked out who just happened to assist me in hospital over one weekend, he sat and explained some things to me. He specializes and works with the university's in and around MO, seems sharp. I will be contacting him today,hopefully I can get in some university program ... I don't mind being a study if it helps others.

yesterday I requested all my records from hospital, that is in the works, it should give me more info.

Dan

[imdan]

Originally Posted by imdan

Hi Anne and suev

thank you for the info. unfortunately, I have asked and get no answer what they mean by non musk. I will attempt to ask again but the way everything went down, I went into crises the same week all the Neuros were at a training so each day was another looking in on me, and than they compare notes with each other. As far as my tests, I have had cat scans mri's xray's, blood works confirmed high antibody s . They found no issue or tumor with the thymus gland. No I was not prescribed mestinon.

I had no insurance and have been trying to get insured for a while. Unfortunately I was in the gap on ssid to much for medicaid not enough for ACA subsidies, so I ended up going to hospital on a financial assistance program from hospital. at the mercies of the hospital network.

I finally get medicare in a few months, just trying to get there, bills are a bit overwhelming.

I have a specialist picked out who just happened to assist me in hospital over one weekend, he sat and explained some things to me. He specializes and works with the university's in and around MO, seems sharp. I will be contacting him today,hopefully I can get in some university program ... I don't mind being a study if it helps others.

yesterday I requested all my records from hospital, that is in the works, it should give me more info.

Dan

Actually I need to correct. I was prescribed mestinon 60 mg every 4 hours, which I think sent me to ER. in crisis, but like I said this is all new to me.
1 doctor after I was stable tried to restart at a lower dose building up. Another insisted I not get it.. that's where I am at.

levothyroxine, protonix 40 mg, prednisone 20mgx2
Dan

[limpy]

Hi Dan,
Sorry to hear what all you are going through. Were you taking prednisone when you went into crises?
That caused me to go I to crises last year.
I noticed that you are also on thyroid meds. Every time I have had any type of crises and had to be hospitalized, my thyroid levels were out of whack, either high or low, so you may want to consider that.
Have they tested you for LEMS (Lambert Eaton Myasthenic Syndrome)? It presents very similar to MG, but has a few other treatment options.

I was told I had MG and was later diagnosed with Lems.

[imdan]

Originally Posted by limpy

Hi Dan,
Sorry to hear what all you are going through. Were you taking prednisone when you went into crises?
That caused me to go I to crises last year.
I noticed that you are also on thyroid meds. Every time I have had any type of crises and had to be hospitalized, my thyroid levels were out of whack, either high or low, so you may want to consider that.
Have they tested you for LEMS (Lambert Eaton Myasthenic Syndrome)? It presents very similar to MG, but has a few other treatment options.

I was told I had MG and was later diagnosed with Lems.

Wow, interesting.
I was prescribed the mestinone 60 mg 4 times per day which seemed to cause me to go into crisis.

this is what I am currently taking.(levothyroxine, protonix 40 mg, prednisone 20mgx2 ) and after a week I feel like its all coming back. however my eyes change daily with some easing of the Diplopia and seem clearer.
M symptoms as of last year started as.....

< Instant double vision, one eye seeing lower than the other, shadows in both eyes,, and a couple shades of color different. seems to have been constant for a year with but a very few instances of eyes straightening out for short periods of time.

excessive eye tearing especially right eye.

Foggy headed,

weakness through out,

pins and needle feelings seeming to travel legs and arms, constant pain in left arm traveling up and down shoulder to wrist.

shortness of breath

gasping for air, no longer yawning

uncontrollable napping

fatigue
headaches migraines

choking, drinking even water

acid reflux which I never had

vomiting , not nausea but food water keeps coming up , wont go all the way down
slurred speech began at the end of the day but progress to the point of unable to pronounce words even in am after sleep

continual feeling of numbness in mouth throat, tongue and when I breath almost like I was inhaling Mentholyptus cough drop a cool feeling

right eye begin to droop but seemed like because i was being trained to ignore dbl vision.

loosing balance, falling both weakness and balance

loss of depth of vision, 2 d vision

having trouble chewing food, biting my tongue a lot.

eventually having trouble just drawing a breath like I was being strangled, if I stay calm I could slowly draw a breath, that sent me to ICU...

I will add to this if I remember more.

By the way I also have to inject 2 ml testosterone every two weeks extremely low, count basically unreadable. (a new mystery)

this is what I am currently taking.[I](levothyroxine, protonix 40 mg, prednisone 20mgx2 )

Dan