• Breathing problems

    Posted by aaron on November 6, 2022 at 5:08 am

    I’m a 47 year old male and I was diagnosed with the dok7 variant of congenital myasthenia about a year ago. I’ve been symptomatic for a few years, but all the tests for MG have been negative. Genetic testing finally found the dok7 mutation.

    I’m curious how others have experienced breathing issues. Mine started a couple years ago as a minor shortness of breath while at rest. It’s gotten progressively worse. Now I’m pretty much always short of breath and I always feel a pressure on my chest. At times the pressure is worse than others, usually in the evenings. Sometimes it’s almost unbearable. I have a history of heart problems, but after a recent heart cath, my cardiologist doesn’t think my heart is the problem. My neurologist refered me to a pulmonologist and after an overnight oximetry test they were able to get me approved for a non invasive ventilator, which helps a lot. Also, my pulmonologist says my pulmonary function test came back nearly normal. Has anyone experienced similar symptoms with MG?

    floridayz replied 1 year ago 9 Members · 13 Replies
  • 13 Replies
  • jeaninne

    November 6, 2022 at 9:55 pm

    I am seronegative also. Was diagnosed six years ago. My main issue is  shortness of breath.  I also have the constant pressure in my chest. I describe it as if I have a band around my lower rib cage.  I have it mainly when I’m having trouble breathing. it’s worse at times like you say. When my SOB is bad I have a small fan that I have blow on my face.
    I have recently had more muscle weakness.

    • andy-coyne

      November 11, 2022 at 7:05 pm

      Sound like you diaphragm to me. I also sweat for England!

  • aaron

    November 7, 2022 at 5:41 pm

    Thanks for the reply. I keep a small fan next to me too! I also have muscle weakness, and my muscles get worn out so quickly doing the simplest things. Sometimes I get really bad body aches. It feels similar to what you might feel with the flu, but no other flu like symptoms.

  • TheresaG

    November 9, 2022 at 9:53 pm

    I’m seronegative, SOB mostly on excertion, except when real bad. At end of day the SOB will increase as ALL the muscles fatigue out. Prior to dx, I saw multiple cardiologists and pulmonologists, and they all scratched their head as all my tests were great. Kinda good to know. Now that I am on a good treatment regimen, vyvgart, 7 mg prednisone and mestinon 60 mg 4-5 times a day, I’m able to mostly manage even the SOB. Though we have weather change now and that will affect me. I also feel I need to wear loose clothing or otherwise the tightness makes breathing more uncomfortable. Much like one with COPD.
    When I’m  fully exhausted, at the end of the day, needing treatment, And have pushed too far, I will collapse on the bed, SOB and it can take 20-45 minutes for my breathing to become normal again.

    we’re all a little different but it’s helpful to see the commonalities.

    • andy-coyne

      November 11, 2022 at 7:03 pm

      I’m 71 and achr positive and told I have ocular MG.

      breathing issues started about a year ago and followed almost exactly the same path as yours and I ended up in hospital with a flare. I am also breathless and sweating most of the time. I can manage a good walk in the morning but by 10pm 20 feet leaves me gasping with a heart rate over 120! Also my oxygen drops at night to under 94% can go down as far as 82%! Doctors have resisted the MG is causing the breathlessness.  I have had lung function tests- all ok. Chest CT scan – clear, positive for obstructive sleep apnoea.  Ecg, stress test, heart CT scan all normal though I only managed 3 minutes on the treadmill. So my lungs are fine, my heart is fine now surely there’s only MG left.

  • joe-b

    November 11, 2022 at 8:39 pm

    43 Male.  Diagnosed 1 year ago.  All the same breathing issues you all describe.  Just pulling out of an exacerbation that lasted 3 months where I was forced to take leave from work.  Hospitalized in July for shortness of breath, especially at night when in bed.  Spend a month sitting up at night in chair.  Definitely the MG.

    Also,  my flare up was caused by reducing my corticosteroids too quickly thinking the IVIG was enough.  This is dangerous.  Now on Ultomiris for 2 month with miraculous results.  The pressure on the chest and sweating is a symptom of the steroids more than the MG.  Overall dirty gross feeling hard to explain unless you are one of us.  Not like the common weakness of MG.

  • jennie-morris

    November 11, 2022 at 9:00 pm

    62 female Seronegative – diagnosed 40 years ago

    my SOB is so bad my PFT showed I had decreased to 6% of normal inspiration and 33% expiration. High resolution CT led to bronchoscopy which showed lipid-laden macrophages. Diagnosis was silent aspiration but my swallow test was normal. I do choke but it seems I clear the aspiration.  I use NIV Astral 150 at night and it’s literally a lifesaver. Walking around on room air puts me in the mid 70s on a good day and yesterday I was at 66 before I could get my oxygen on (emergency bathroom visit from bed). I’m on Hizentra and Mestinon 120mg every 3 hours. I’m trying pulmonary rehab to strengthen my diaphragm so we’ll see. It’s all MG related.

  • mark-cox

    November 11, 2022 at 9:34 pm

    I’m a 62 year old male and was finally diagnosed with MG about a year ago after experiencing some of the normal Vision, muscle weakness and swallowing issues and seems I have developed all the MG symptoms since but the most concerning or most noticeable symptoms are my breathing and muscle weakness’s… I still travel a lot for my job and walking through airports are a nightmare and usually sweating and out of breath by the time I reach my terminal.

    My breathing symptoms are very similar to yours and I’ve even relocated out of the Rockies to lower elevation to help with my breathing in addition to using oxygen on bad nights.. I’m a non smoker but was being treated for COPD for the last 10 years after ruling out allergies, asthma, chest X-rays and other respiratory symptoms… About 18 months ago, my breathing was getting worse so I went to a specialty respiratory clinic for my breathing disorders and the Doctor there told me that I definitely have some sort of breathing issues but it was not COPD. He gave me some different inhalers and sent me on my way…  Six months later I ended up at my neurologist doctor that diagnosed me with MG and was fairly confident that my breathing issues are definitely related to my MG.. Shortly after that,  I ended in the Hospital with my oxygen levels down between 79-82. They brought me back up into the 90’s overnight with oxygen but I have been using oxygen at nights since and using portable tanks in higher elevations visiting my kids…

    Hope that helps..


  • jane-delisle

    November 11, 2022 at 10:39 pm

    My daughter was diagnosed 3 years ago at the age of 21 with MG, I’ve had to be her patient advocate. At one point, before diagnosis, she was having a lot of breathing problems and found a supplement containing 5-Loxin (leukotriene inhibitor) and Salicin (prostaglandin inhibitor), both anti-inflammatories, to be a miracle for her. Which makes sense, because MG, like any autoimmune disease, is attacking the body and generating inflammation.

    Her MG doctor explained to us that when the lung muscles are affected, symptoms are worse when one is asleep. When one falls asleep, all the muscles in the body become paralyzed except for the diaphragm. When one is awake, there are other muscles that help with breathing, so symptoms may be less when one is awake. Many MG patients, including my daughter, benefits from a BiPAP machine at night. CPAPs don’t work because they blow constant pressure, the BiPAPs back off and let the body exhale. While we were going through the insurance circus of getting a BiPAP, she was able to get by with oxygen supplementation during the night. She has always been fine during the day.

    As for MG, it’s not just “its own thing”. It should be viewed as being part of an auto-immune disease “spectrum”, all related by the same problem of mis-programmed antibody producing immune cells, with different mis-programming for different autoimmune diseases. Not surprisingly, treatments are all very similar. Different drugs for different autoimmune diseases can significantly and merely be a result of the FDA approval process, not actual efficacy.

    As the immune system is designed to react locally, not systemically (if you smash your toe, your thumb is not going to swell up), MG symptoms can begin with local symptoms like ocular, swallowing, etc. Many non-MG-expert doctors go by textbook symptoms and may miss things like breathing problems. My daughter’s started in her hips and knees. But I read somewhere that ocular MG may evolve into generalized MG in about a year.

    So the goal of treatment is to reduce the production of those nasty auto-antibodies, whether by prednisone, DMARDs, biologics, IVIG, Plasmapharesis or thymectomy. Mestinon is just a band-aid – it does not reduce the antibody attack but merely magnifies the nerve/muscle communication to reduce symptoms. While Mestinon is a useful tool in the toolbox, MG should never be treated just with Mestinon.

    End of spiel.

    • joe-b

      November 12, 2022 at 12:04 am

      <p style=”text-align: center;”>Jane,  what brand supplement do you use.  There are so many out there.  Thanks.</p>

  • celeste-m-matthews

    November 12, 2022 at 8:28 pm

    I  have been diagnosed with seronegative MG. I have eye problems, voice problems, swallowing problems, overall muscle weakness, and really bad breathing problems. Nothing so far has helped me all that much. I still push myself to do things.

    I am discouraged.

    • jeaninne

      November 12, 2022 at 10:07 pm

      I too am seronegative.  I was diagnosed in 2017. It’s easy to be down when your life has been turned upside. Especially when you have no
      definite diagnosis. Up until recently I had been on both oral medication and IVIG. I had to change Drs, my old one went in to Research. New Dr doesn’t believe I have MG , since I’m seronegative. So he canceled my IVIG treatments. I’m very discouraged since they worked. But we have to be MG strong. So hang in there.  Take care and rest when needed. It’s hard especially if you were a active person.  If you have trouble with breathing, I find it helpful to use a small fan blowing on my face.

  • floridayz

    November 13, 2022 at 7:01 pm

    Thanks for posting . It’s heartening to hear others stories , when you’ve been belittled by doctors telling you , that’s not an MG symptom .
    I’m not familiar with genetic testing and results . Is that what they used to diagnose you ? Being seronegative or did your doctor go on symptoms ?
    Thanks again , you give me hope .

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