Hi everyone! I am a newbie on the site. I have been diagnosed with MG since June 08.

My question is do any of you have respiratory fatigue that requires the 24/7 use of oxygen? I have heard people say that they have gone into a crisis and needed ventilation but never that they need oxygen all the time like me.

I am 26 years old with a laundry list of medical problems but with Myasthenia Gravis it has knocked me right on my butt. I have tried Prednisone and the only thing that it did was make my heart race and make me gain 40lbs. I have also tried Cellcept but it made me dizzy like I was going to pass out. Mestinon works but I have to constantly change my doses since it can differ from months to weeks to days at a time. As you can probably can tell I am either really sensitive to medication or it just doesn't work at all.

I also want to know if anyone has constant chest pains? My doctor has recommended a thymectomy but in a way I am scared since I don't heal correctly, keloids, and I worry about how the scar will look. I have previously had to have corrective surgery because of the scar tissue latching on to other things and causing problems, so I don't want to have to go through that again.

Sorry for the long post. Thank you for reading and/or responding.

Stephanie

Stephanie, Welcome.

It's unusual to need oxygen 24/7 but some people need it at night. Have you seen a cardiologist and pulmonologist to rule out other problems? If not, please do! If you have an inability to heal, maybe you have a PFO (patent foramen ovale) or ASD (atrial septal defect) in your heart. We all have a hole in our hearts at birth but they usually close up in the first few years. I have a PFO.

Have you had a consult with a rheumatologist? Or dermatologist about the keloids?

Chest pain needs a complete evaluation right away. It might be as simple as costochondritis (inflammation of the breast bone area) or something more serious.

http://www.mayoclinic.com/health/cos...dritis/DS00626

A thymectomy is a huge surgery, since they usually (though there are other ways to do it) crack open the sternum like they do in open heart surgery. I had consulted with a surgeon about a thymectomy and closing up my PFO and they said we could pluck out your thymus but the PFO would be the major aspect. They wouldn't do either (too many complications for me).

Has anyone discussed IVIG? Plasmapheresis?

It sounds like you need more doctoring. There is always a reason for why things are happening, why you are having symptoms, don't heal well, etc. Someone needs to help you figure all this out! I hope you'll seek out help soon.

Annie

Thanks for replying Anne! I have had a thorough work up when they first noticed my low oxygen levels. After my pulmonologist and cardiologist could not find anything with two heart catherizations (one at the Mayo clinic) and 30 specialists, they decided to see if I had a muscular problem and that is when he diagnosed me with MG.

I have seen a rheumatologist and she diagnosed me with fibromyalgia. The dermatologist says it is nothing they can do except hold pressure to the site for up to a year, but even that is not guaranteed.

I have been hospitalized 3 times in the past for the chest pain and after a while they just send me home. It comes and goes in different severity but it is always there. By the way, the last CT showed a shadow around my thymus but my insurance ran out so I havent had a chance to get another one. So, could a growth on your thymus cause chest pain?

I just want to know if this is normal for MG patients and how they have dealt or are dealing with it?

Thanks!

Well, this is a conundrum. Do you have a BP cuff at home? Have you taken your BP when you have chest pain? Have they done an echocardiogram too?

Sometimes chest pain can be from either dehydration or electrolyte imbalance. Have they checked out your thyroid? Done chem panels? Liver, kidney, etc.?

The thyroid, parathyroid and thymus are in fairly close proximity to one another. Has an endocrinologist seen you?

My other thought was are you taking calcium AND vitamin D? So many people have a vit. D deficiency. That can cause pain and fibromyalgia-type symptoms.

The body is a funny place. Chest pain makes people immediately think of the heart and lungs. It can be lots of other things like nerves or endocrine problems. Has anyone checked your B12 level?! Do you have any symptoms of celiac disease, another very common disease?

A thorough workup to me means nothing! I've had them at various times and doctors have completely missed stuff like a B12 deficiency. If you aren't running the right test, or asking the right questions, you are going to miss the answer.

A thymoma, a tumor of the thymus, could cause pain. Did they do the striated antibody test or the Acetylcholine antibody test (knowing Mayo, yes they probably did). Find them. If they are high, your chance for a thymoma goes up.

Did they cardiologists do an ankle brachial index (ABI)? It's when they check your BP on your ankles and arms. Depending upon the results, it can indicate peripheral artery disease. If you have an occlusion, that can bring your O2 stats down.

What about APS (antiphospholipid syndrome)? It is a common clotting disorder. What about a D-Dimer to look for a clot?

If you don't have all your test results, get them!!!! I cannot stress that enough. You need to know everything they have done.

I would not accept that it's "just the MG" causing your O2 stats to be low. Did the pulmonologist walk you around to see if they drop when you walk? Did they do MIP and MEP breathing tests to see if the cause is neuromuscular? Did they do an arterial blood gas, which can show the severity of whatever breathing problem is going on?

Well, those are my thoughts for tonight. I'm worn out.

Annie

Hi Stephany,

I agree with all of Annie's advice...The shadow that showed up on your CT scan is worrisome...If you do have a thymoma, they can cause chest pains and if you have MG, tend to affect the bulbar muscles (diaphragm (sp?), chest, tongue, pharyngeal, palate, facial muscles....Not necessarilly all together at the same time or in that order) more severely...I had a thymoma, and you and I happen to be the same age...I had chest pains also...They were very random...I also experienced perioids where it felt like I couldn't get a complete breath...I would also become breathless doing very little...I smoke, so I thought that it was from that, although it could have been...

Also, with me, I had chest weakness and hand weakness years prior to developing speech issues which lead to the diagnosis of MG...

I hope that you can get another scan done somehow! Are you able to get a hold of the old scan?

Hi Nicky! Thanks for posting. I believe I can get the old scan, but my neuro told me he wants it out when I'm stable. I'm just not sure what exactly stable is at this point

Anne, to answer your questions: from what I remember I did have a few arterial blood gases done and one po2 was in the 40s. I take plenty of vitamins, including b12, so I know that is not an issue. The blood results that were constantly done just showed I was an anemic.

I was also tested for sickle cell anemia which was negative. I also saw a Hemotologist to see if the anemia or any other blood disease was the cause but it was not.

The pulmonologist did have me walk for ten minutes with a pulse oximeter attached to me and the first time it went to 85 the second time, almost a year later, it went to 78. The first pulseox is what raised concerns.

I do have a bp at home and I moniter my bp but it is usually low or normal. If I'm sick it will go to 90 over 60 because my body is exhausted, but normally it's 110 over 70.

Mayo only focused on the pulmunary and cardiology part of it since that is what everybody thought I had a problem with. So they sent me home telling me I was fine when I wasn't.

I have had an ecg and an ekg and both were normal. A nerve conduction & muscle reflux study which confirmed the myasthenia. Also, a spirometry that was normal for an asthmatic.

I do have my records packed away somewhere so I will have to find them, but I can tell you that they looked at EVERYTHING. From whether I was absorbing vitamins correctly, to pulmonary embolism, to acid reflux and they saw nothing! They even thought that it may have been my asthma so they increased all of my doses to rule it out. It got to the point that the hospital would turn me away beacuse they figured I couldn't be helped. They basically told me to live with it, oxygen and all.

It was odd because for me it just started when I couldn't breath and then it escalated from there to were my words get tongue tied, I started choking on my own saliva, my vision going double when I'm tired, etc.

I will update if either I remember anything else or find my records. Thanks for the advice!

Hi and welcome to the best place for answers and support.

I too get chest pain, and have fibro along with the MG, I was in my 20's when I was DXed and I had a Thymectomy and I am glad I did because I ended up going into remisssion for 17 years. The scar fades away in time, at first }because I was so young} I too worried about what the scar would do to my looks, but than I realised it was my badge of honor, my badge of survival.

I am super sensitive to medications so the only thing I take is the mestinon, and I rest when needed. I know it puts a big damper in plans at times but I am alive and happy.

I don't have to use oxygen although there are times when I wish I had it

Hi Cherry and Welcome to the neighborhood!

You will love it here....lots of wisdom and support can be found here. I'm sorry to say but I haven't experienced any problems with my respiratory with MG.

It does sound like you are having great difficulties breathing and that needs to be checked out before a crisis situation.
Maybe get another opinion with another specialist??

I agree with Annie, has your doc recommended IVIGG yet? It could offer you some relief. If not, you need to inquire about it.

Take care
JJ

Hello and welcome!

I am so sorry to hear you are having problems breathing - I've only had a few problems in that area and it was truly terrifying!

MG is called the "snowflake disease" b/c it effects all of us in different ways...though being on oxygen 24/7 must be a real pain in the butt!

Do you have anyone to help you out? Do you wear a bracelet in case of an emergency?

I hope this post finds you happy and strong!

Erin

Hi Erin!

Thanks for the concern. I do wear a medic alert bracelet. Since I am so self sufficient (or stubborn ), I rather not have anybody help me out. I just do things that need to be done first and do the rest when I feel up to it. I have learned the hard way not to push myself to do something that can be done tomorrow

I plan on going to the doctors tomorrow, but it is a pain since the county pays for my care and they make it so hard to see a specialist. I will update on how well it goes.

Thank you to everyone for your advice.

Stephanie