MYOCLONUS
Nightly and now at times during afternoon nap. When extremely short of breath, my ribs feel as if squeezing and aching pain in the past. Now only mild activity brings it on. Anyone experience these??
Have you had a sleep study? Do you seen an educated pulmonologist?
MG affects muscles of respiration between the ribs and that big diaphragm at the top of the abdomen and abdominal muscles help with breathing. Your pulse ox will be normal at the same time your single breath count (take deep breath count outloud as far as you can) may indicate you need ER ( under 20) but you need to educate MD to this from MGFA website. I didn't have apnea just hypo ventilation, got better with bipap used any time I lay down. I wish you so much better nights and days.
Hey! How have you been doing lately??
- Jodi, Team Member
How did your appointment with the epileptic specialist from Mayo Clinic go? You said, "my ribs feel as if squeezing and aching pain" Dysesthesia... this is referred to as a MS hug although it happens in many different conditions not just Multiple Sclerosis. I also get in in my wrists. I also get myoclonic jerking at time very severe (Dx with Parkinsons before they figured out MG!) not just at night. I also have apnea and use a cpap machine. Hugs!! Sally Farrier...Myasthenia-Gravis.com (team member).
Recently had crackles bilaterally in lower lungs, but sides of ribcage felt like something was trying to carve them in (like wearing a corset, if anyone remembers those). Breath so shallow and slow, I thought my time has come for me to say goodbye of course when put on 40 mg Lasix with KCL my lungs flushed but took 5-6 days before ribcage pain stopped. This was not my first parade with lung fluid and "drowning" and so much pressure I was suffocating. Awful feeling.
I'm so sorry you're having a difficulty breathing. Along with MG, I also have asthma & hypothyroidism, which makes it more difficult to determine which one is causing the breathing issue. However, though I don't have the aching sensation, I do know that the shortness of breath is as miserable as they come. Sometimes, I feel like I could be having a heart attack, when it's just the asthma & allergies causing pressure. My inhaler & nebulizer work for me. What have you been doing for yourself to compensate? Just to be safe, please be sure to discuss with your physician, if you haven't already. Hope you're doing better soon! Best wishes! - Janice (Myasthenia-Gravis.com Team)
I found that recliner resting is ineffective. Lying totally flat in bed seems like the only answer. It is not strange to think that. Muscle tension with total relaxation and restful breathing does wonders for me. @Janice Koehn please read comments below
