Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

1,709 Members

7,414 Posts

0 Online

trinity419 06/12/2013

I want to first Thank God for his mercy and grace. I didn't think I would be around to share this unfortunate experience. For months I hd been feeling run down going to Neuro, FP, Pulmonolgist trying to figure out if I had. Bad sinus infection. Swallowing and speech became affected in March Nd family doctor said it was pneumonia treated it with zpack..which I tolerated well. Pulmonolgist said asthma was triggered started as air 250/50. All approved by neuro of 13 years. Neuro started me on prednisone in May 25. May 28 went to work and by 9am could not breath. Co worker took me to local hospital... Hd all my info ready as I could not speak. Immeadiately taken to ICU and given meds. Next thing I remember is taking a ct scan with dye. By the time I got back to my bed my diaphragm had weAkened and I was nearly strangling the nurse who kept saying ur o2 is 98. Thank god my family hd arrived and screamed she's in crisis. 10 days of intubation, fluid around the heart and lungs and the miracle of plasma pheresis i am here with a testimony. Listen to ur body. If something doesn't feel right take the time to make a correct diagnosis. I still hd to be treated with 10 days of antibiotics to get rid of pneumonia which I thought was gone. Although I am still in ICU hopefully waiting to be moved to a regular room. I Hv officially put my need to always be on the go on pause . I need to appreciate the small things in life like seeing the sun shine and looking forward to feeling fresh air.

Definitely a renewed spirit at 43

limpnoodle 06/12/2013

So sorry this has happened to you. Will be thinking of you as you recover. Don't blame yourself for not listening to your body. I did the same thing with similar results. Just thankful we are still around to speak of it.

GreenMarie 06/12/2013

This is a cautionary tale we all need to read closely. So much happened here that culminated in a very scary event. Thank goodness your family had it all together. So often on the surface things like oximetry can look ok when the patient is in crises.

So sorry you had to go through this. It was harrowing to say the least.
In the coming days your family and you will appreciated so much time spent together and I pray for good days ahead. I am so glad you are posting here and will be taking time to as you say see the sun shine and feel the fresh air. Hugs! Marie

deleted_user 06/12/2013

Sorry for your big adventure. Not the kind you wanted to have. Hope you get a regular room soon and that you can get out of there as soon as possible.

DebbieF777 06/12/2013

I am glad you are better. I am home from ICU after a crisis as well and praise God that he's seen me through!

snowbeltfolkie 06/12/2013

What an awful experience, so sorry you had to go through this.
Your description of what happened to you - is very similar to what happened to me. I'm in your corner, that's for sure!
Bless you! - Ross
(... welcome home, Debbie! ...)

Tim62 06/12/2013

So sorry to learn of your frightening experience. Thank you for sharing it. Hope you feel better every day, and are home soon.

newmugg 06/13/2013

Glad you are extubated and on your way to a regular room. Crisis is scary and can happen fast. Thankful your family knew the signs!
Hugs,
sherry

lindsayamaral 06/13/2013

This was such a frightening experience, thank goodness for the vigilance of your family. Thanks to you & others recently sharing your serious ICU stays; I am going to insist that my family pay attention to my printed instructions and make every nursing shift aware of them if a crisis should happen.

May God bless you with many more years of sunshine and moments of being really in the present.
~Marina

trinity419 06/16/2013

Thank you all for your encouraging words and support. This forum has been my saving Grace and gave me the knowledge and sheer will to survive this crisis and recognize that this indeed was a crisis. I HD 3 rounds of civic and 7 rounds of plasmapherious. Also prednisone up to 30 Nguyen and tapering down in 10 days. Fluid on lungs and pneumonia were possible culprits of crisis. I'm home now on the road to recovery. I am having terrible insomnia from the prednisone. Has anyone used melatonin and should I expect any th ing in the upcoming days? I am still taking mestinon 60mg 4 tines a day. I see try the Neuro for follow up in 2 weeks

angepugin 06/17/2013

So glad to hear that you are back home after your scary crisis! I was also discharged yesterday after a crisis and it sure feels good to smell the fresh air and appreciate the simple things. I am so routing for you and Debbie and all of us out there that may not be doing so great! Praying you get a much better rest tonight too. I haven't personally tried melatonin but have heard from others that it has varied results. I am always nervous to use anything in case something in the preparation affects my MG but I also realise that lack of sleep exaccerbates my MG so it's a tough one. Soothing music, a book and a warm bath before bed occasionally helps me. Sending you healing thoughts and an African hug! Ange

CarlyMichelle 06/17/2013

I've never had a crisis, but can imagine how scary that was. Thank God you are okay.
Hugs,
Carly

deleted_user 06/19/2013

Thinking about you....be well....so sorry you are going though this....sending you some strength...

Join the Conversation