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...
I'm hoping some of you can provide me with some guidance as to what it is I am experiencing and if it is something that is a result of the mg and if I need to mention it to my neuro.
Last March I was hospitalized for an mg crisis. I had a round of ivig treatment while there. Sometime after I left the hospital (I don't recall how long it was but I think it was around late April or early May). The ivig had worn off and I was getting worse again which included weakness and difficulty breathing. I was taking 1,000 Cellcept (which was increaded to 2,000 mg at end of May), 180 mg mestinon, and 40 mg prednisone.
As I got worse, I started having trouble deep in my throat. It became harder to talk and it hurt to talk. It's like a sore throat but instead of being at the back of the mouth, the soreness and pain is way down in my throat. It's just above where the neck meets the main part of the body (maybe an inch or two above). If I talk at a normal voice or talk very much my voice sounds like Froggy on the Little Rascals. The soreness is constant now no matter whether I talk or not.
In addition to the soreness some other strange things are happening. First, when I am laying down and breathe there is a clicking sound and I can feel something in my throat each time I hear the clicking. When I swallow, the clicking will stop for a few breaths then start again. There isn't any mucous so that can't be causing the clicking. This only happens on my really bad days.
Snoring is caused from a flap of skin at the back of the throat blocking the airway when sleeping on your back. I am wide awake and sometimes when I take a breath I will make that snoring noise. I don't even have to be laying down for it to happen - sitting or laying on my side or stomach makes no difference. The worse condition I'm in, the more it happens.
Again when I'm worse, I experience a very strange thing. The best way to describe it is to give an example of air bubbles in water. When air bubbles begin to float to the top of the water and come up underneath something, the bubbles stay there and combine until they become big enough to float past the obstacle. This is what it feels like in my throat. I can feel the lump of air get bigger until the air bubble finally goes past what feels like some sort of blockage in my throat. It's in the same area as where the clicking sound comes from.
Another thing is that I have to keep my head tilted up. If I tilt my head down toward my neck my chin puts pressure on the lower part of my neck and feels like I am choking. This is constant whether I am having a bad day or good day.
I hope someone can shed some light on all of this for me. Any information, suggestions, or advise anyone can offer will be greathly appreciated.
Thank you.
Last March I was hospitalized for an mg crisis. I had a round of ivig treatment while there. Sometime after I left the hospital (I don't recall how long it was but I think it was around late April or early May). The ivig had worn off and I was getting worse again which included weakness and difficulty breathing. I was taking 1,000 Cellcept (which was increaded to 2,000 mg at end of May), 180 mg mestinon, and 40 mg prednisone.
As I got worse, I started having trouble deep in my throat. It became harder to talk and it hurt to talk. It's like a sore throat but instead of being at the back of the mouth, the soreness and pain is way down in my throat. It's just above where the neck meets the main part of the body (maybe an inch or two above). If I talk at a normal voice or talk very much my voice sounds like Froggy on the Little Rascals. The soreness is constant now no matter whether I talk or not.
In addition to the soreness some other strange things are happening. First, when I am laying down and breathe there is a clicking sound and I can feel something in my throat each time I hear the clicking. When I swallow, the clicking will stop for a few breaths then start again. There isn't any mucous so that can't be causing the clicking. This only happens on my really bad days.
Snoring is caused from a flap of skin at the back of the throat blocking the airway when sleeping on your back. I am wide awake and sometimes when I take a breath I will make that snoring noise. I don't even have to be laying down for it to happen - sitting or laying on my side or stomach makes no difference. The worse condition I'm in, the more it happens.
Again when I'm worse, I experience a very strange thing. The best way to describe it is to give an example of air bubbles in water. When air bubbles begin to float to the top of the water and come up underneath something, the bubbles stay there and combine until they become big enough to float past the obstacle. This is what it feels like in my throat. I can feel the lump of air get bigger until the air bubble finally goes past what feels like some sort of blockage in my throat. It's in the same area as where the clicking sound comes from.
Another thing is that I have to keep my head tilted up. If I tilt my head down toward my neck my chin puts pressure on the lower part of my neck and feels like I am choking. This is constant whether I am having a bad day or good day.
I hope someone can shed some light on all of this for me. Any information, suggestions, or advise anyone can offer will be greathly appreciated.
Thank you.
b.
Thank you for your help.
Given your descriptors, it sounds like the MG is generalizing and that your current regimen is not working. 40mg of prednisone isn't a very big dose, no matter what your doc may tell you. You should also consider more IVIG or some PLEX.
Unfortunately, most docs are very conservative - too conservative in my opinion - at fighting MG symptoms with all avaialble technology and medication. I learned this from very nearly having croaked from the disease, only to find out I really needed double the amount of steroids I had been given to keep the symptoms safely at bay.
Note that with MG, it's the symptoms that kill, not the underlying cause. This is very different from other modalities like cancer where you might not experience symptoms and the disease is doing the killing. This distinction is critically important to understanding survival with MG. While you do, of course, want to treat the underlying disease, first and foremost, you need to treat symptoms.
Curt
I had another round of ivig just before Memorial Day. The doctor combined the 5 days of treatment into 2 treatments. Actually, there were 5 days separating the first and second treatments because I got much worse after the first one and the doctor sent me to the emergency room because I was in respiratory distress. I spent the next 5 days in bed and on oxygen - too weak and short of breath to be able to move. The doctor wasn't sure if the ivig caused the trouble or if it was coincidence so he went ahead and gave me the second half of the treatment 5 days after the first treatment.
It has now been 3 weeks since the last half of the treatment but there has not been much improvement in the symptoms. The weakness has improved a bit but the biggest problem, namely the breathing, is still a major issue. Just getting up to get a drink leaves me breathless. The blurry vision is continuing to get worse.
On top of all of this, there are the throat problems previously mentioned. I am going to contact my primary doctor to have my thyroid checked out. I have been taking thyroid medicine for about 15 years so it probably should be checked out. I'm also going to mention this to my neuro.