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...

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Respiratory Therapy

Rebecca-Medina
Rebecca-Medina
I will be coming up on my one year anniversary of being diagnosed with Myasthenia Gravis, Musk positive. I recently began seeing a physical therapist due to feeling that the middle of my back was going to collapse. After about a month of therapy, my therapist has come to the conclusion that I am using so much effort to breathe that the muscles are trying to compensate which is causing my spine to become stressed. She has suggested that I see a respiratory therapist. I'm wondering if anyone has had the opportunity to meet with/ treat with a respiratory therapist. I live in Rhode Island.
jeanniea
jeanniea
Hi,

I have met with a respritory therapist many times for this.

When my back, rib area get painful from trying too hard to breathe,the therapist always call the neuro about meds/ treatment adjustment.

I used to get IVIG when my breathing did what you are describing. It helped:)

Jeannie
Rebecca-Medina
Rebecca-Medina
Thanks for your input Jeannie!.. As with everyone else, it is often a little comforting knowing that I'm not crazy and what I am experiencing happens to others! Since posting, I have spoken to someone who has suggested I meet with a pulmanologist (sp?). Waiting to hear from my neuro.
cgreens
cgreens
I don't have any suggestion for you, and I hope others can give you some insight.

We are here for you whenever you need us! Anytime you want to vent, feel free. We all are very good listeners(reading wise).

I am sorry that your back isn't stronger for you, and I hope this changes for you soon. We always remember when we are diagnosed and I look forward to the day when we can all put some of this stuff behind us because we are feeling so great.

Best wishes for peace,

TJ
judithwilson
judithwilson
Hi Rebecca,

It sounds like your mg is not under control if you are having so much trouble breathing that it is causing your back muscles to ache. I had a hard time finding a neuroligist that specializes in in neuro muscular diseases, in particular mg. What treatment are you on now? Do you have any other mg symptoms. Has your neuro suggested changing your treatment?

Judith( also from ri )
Rebecca-Medina
Rebecca-Medina
@judith. My current treatment is 25 mg of prednisone and 250 mg of azathiaprine(sp)..imuran. i was on 30mg of prednisone and have been tapering.. i felt a huge decrease in strength when i tapered from 30 to 20. apparantly that was too much of an increase. i have increased to 25 but i am still feeling weak. i am avoiding the er because i have a one year old and two school age children who need me at home but its getting to the point where it is painful to breath, i am lightheaded and have mild headaches. yesterday i had a scare while eating; i had to reach into my mouth and pull some food out but oh how I hate the ER!!!!!
Rebecca-Medina
Rebecca-Medina
@tj, thanks for your kind words.
deleted_user
deleted_user
Rebecca, I have had the "musk" MG for 2 years. I, too am tapering off predisone and currently take 10mg every-other-day. I started at 60mg every-other-day. The first time I started tapering off, my symptoms returned with a vengeance. It has taken me a long time to get it right. I also take 2500mg of cellcept daily. I see a neurologist who is a specialist in MG. I agree with that your meds need tweeking. I would suggest you contact your local, or the closest Myasthenia Gravis Foundation of America chapter (find them online at http://www.myasthenia.org/. They have great information and offer patient support.
deleted_user
deleted_user
I was diagnosised with MG not quite 3 month ago. My symptoms are mostly speach and swallowing but I do tire very easily. When I tireI get short of breath even though my pulse ox is always between 97-100%. The problem is the muscles of the chest wall and diaphram. I was able to get a bipap machine that assists with breathing at night and nap.It seems to help me rest those muscles when I need to and get my strength back sooner.