[wild_cat]

Hi everyone.
I've been having increasing difficulties breathing over the last weeks and I wanted to ask you if you have any advice for me on how I can manage it. Since I became unwell three years ago I have a feeling of pressure on the left lower side of my rib cage, as if someone where pressing on it. This sensation waxes and wanes depending on how good or bad a day I am having. When I try to take a deep breath this pressure prevents me from expanding my chest properly. At times my breathing becomes awfully shallow and sporadic, as if I need to remind myself to breathe on every breath, the air feeling thick and heavy.
In the last days I have been having big problems at night. I was taken to hospital in the early hours of Saturday morning following three episodes of what I can only describe as a folding or collapsing sensation in this area on the left lower side of my rib cage. They did a chest CT and bloods which were clear and then subjected me to three neuro exams in the space of six hours, which exhausted me completely, especially my eyes. They discharged me on the basis I am currently being referred to a neuro who will think of doing a tensilon test as they are guessing with my other muscle weakness that the breathing issues are diaphragmatic.
I have since been trying to sleep upright but now I am getting very breathless even in this position. As I begin to fall asleep I wake up gasping for breath. I don't know what to do anymore. I'm scared if I go to sleep I will stop breathing altogether.
Thanks for your thoughts,
wild_cat

[StephC]

The breathing issues were very overwhelming to me initially (uncertainty in understanding, knowing wat it meant, etc). Couple things have helped me...i purchased an pulse oximeter to see if i could identify any patterns, correlations with oxygen levels (i have times when low and avoid things that cause it to be low). Another thing was that i never knew how i would know if i actually was having problem but seems i am ok if i can take breathe then count out loud to 20...if less than i know to take it easy

[alice md]

Originally Posted by wild_cat

Hi everyone.
I've been having increasing difficulties breathing over the last weeks and I wanted to ask you if you have any advice for me on how I can manage it. Since I became unwell three years ago I have a feeling of pressure on the left lower side of my rib cage, as if someone where pressing on it. This sensation waxes and wanes depending on how good or bad a day I am having. When I try to take a deep breath this pressure prevents me from expanding my chest properly. At times my breathing becomes awfully shallow and sporadic, as if I need to remind myself to breathe on every breath, the air feeling thick and heavy.
In the last days I have been having big problems at night. I was taken to hospital in the early hours of Saturday morning following three episodes of what I can only describe as a folding or collapsing sensation in this area on the left lower side of my rib cage. They did a chest CT and bloods which were clear and then subjected me to three neuro exams in the space of six hours, which exhausted me completely, especially my eyes. They discharged me on the basis I am currently being referred to a neuro who will think of doing a tensilon test as they are guessing with my other muscle weakness that the breathing issues are diaphragmatic.
I have since been trying to sleep upright but now I am getting very breathless even in this position. As I begin to fall asleep I wake up gasping for breath. I don't know what to do anymore. I'm scared if I go to sleep I will stop breathing altogether.
Thanks for your thoughts,
wild_cat

I think you need to see a respiratory physician and have proper respiratory tests.

There is nothing that has to be guessed.

[jana]

YIKES!! I sure don't want you to DIE waiting for a diagnosis!!

So, I'm gonna make a recommendation. Get some ephedrine and see if it helps your breathing. You can get ephedrine in tablet asthma meds -- Primatene or Bronc-aid (sp?).

EARLY on (in the 1920's, I think), someone discovered that ephedrine was like a "miracle" drug for MGers. It gives us a boost -- restores some strength. Of course, long term use is NOT good for your heart. But, with you sitting there worrying about stopping breathing...........

Here is a link -- scroll down to "treatment and monitoring" and see ephedrine sulfate:
http://www.medicineonline.com/articl...ia-Gravis.html

CAUTION -- IF you have heart problems, ephedrine should be avoided or used with great caution. (See warning labels on box.)

[Anacrusis]

Originally Posted by wild_cat

Thanks for your thoughts,
wild_cat

Here are my thoughts wild_cat:

What day is your neuro appointment?
Do you have people around you when you are the most anxious?
Are you on any medication now?

I canīt give advice but can tell you that in my case my open minded GP prescribed me Mestinon, and whilst I was scrutinizing itīs effects on vision problems it also surprisingly greatly relieved diaphragmatic muscle weakness 20 minutes after dose. For sure it does not work on everyone. My symptoms are milder but I can count on this medication working consistently with my breathing muscles until I get a pulmonologists appointment. (I need a break from the neuros ) But I never ever expected it to do such a great job.....hang in there.....keep in touch.....

[wild_cat]

Thanks for your replies! I forgot to mention that the Dr on duty in the hospital referred me for some specific neuromuscular/lung function type tests. He said they will be in about two weeks. Unfortunately I think the ephedrine will be a risk for me with suspected carotid sinus hypersensitivity, which dramatically effects my heart rate. I don't have a date for my neuro appointment yet, I'm still waiting to hear from my GP (he was meant to call today...). I asked to try a trial of mestinon but he says he's not authorized or confident to give me the trial because of the CSH and was going to check with a neuro and come back to me. I'm staying with my parents now who are very supportive and we just installed a monitor in my room in case I get in trouble during the night again. The only trouble is I'm two hours from the nearest hospital so we're quite far from help. I'm not taking any medication at the moment, I seem to be extremely senstive to a lot of things that really exacerbate the muscle weakness.
Thanks again for all your support...

[jana]

Ugh -- SEE my memory issues!!

Actually, the ephedrine might help your carotid sinus hypersensitivity, too.
http://www.uspharmacist.com/content/..._care/c/33096/

"Medication management of vasodepressor carotid sinus syndrome is less successful: Ephedrine has been reported to be useful, but long-term use is limited by side effects; dihydroergotamine is effective but poorly tolerated; fludrocortisone produces good results but its long-term usefulness is limited due to adverse effects.6 Midodrine use appears promising based on a recent small, randomized, controlled trial.17"

BUT, I would want a doctor to clear this FIRST!

[bny806]

so sorry to hear about all of this!! Has anyone even done basic pulmonary function testing (FVC or anything)? I had/have similar symptoms.. even when I went to sneeze, i coudlnt' get a complete sneeze, as my diaphram wouldn't move eough to get a big sneeze.. I went to the neuro at that time and my FVC ( a test they can do in the ER too), was 72%... this is when they admitted me.. my pulse ox was still ok though..
i agree with the pulse ox purchase (i got one off amazon)... when I feel like I cant breathe it makes my mind at greater ease when I see the actual numbers- either way - if they are low, i gotta go in, if they are good - It does help me relax a bit more...

It wasn't until getting IVIG that i had an easier time..have they talked about a trial of IVIG? Are you waking up with headaches?

[AnnieB3]

wild_cat, First of all, it doesn't matter if you have a diagnosis or not. Not being able to take a breath in or out is an emergency. As in dial 911. I'm sorry the hospital is so far away, however, that makes your situation even more dangerous.

The benefits of dialing 911 are twofold. One, the EMT's can give you oxygen and set you up for care. Two, you will be seen immediately (or relatively so) in the ER once you get there.

Did they do even a peak flow meter test? Bedside spirometry? I cannot (or, rather, I can) believe that you were treated so poorly in the hospital. Did they even do an arterial blood gas? Did they check your oxygen saturation?

If you have MG, you can get so bad so quickly that you cannot take care of yourself. Do you live with someone who is aware of all of this?

You cannot go on this way. This kind of breathing is so very serious. You can die, if it's MG causing it. I'm not saying that to scare you! But these doctors were boneheads and should've consulted with pulmonology in the hospital. Discharging you without fully evaluating what was causing you not to be able to breathe is unethical and they opened themselves up for malpractice. They risked your health by not doing pulmonary related testing.

In the meantime, you need to have complete rest. But, to me, it sounds like you are so bad that you need hospital care, including oxygen.

Did they give you Iodine contrast with the CT? I'll almost bet they were looking for a PE (pulmonary embolism). Iodine can make MG worse. BTW, did you get a copy of the report? Ask someone you know to call the hospital to ask for your medical records from that night.

When someone with MG has breathing issues, they can get what's called atelectasis (Ah-tell-eck-tay-sis). It can be a very small "collapsing" of a portion of the lung or a larger one. Now, do not freak out by this!!! I've had this a number of times. When you don't take deep enough breaths in, you can have this happen. It's reversible. That "might" be part of what you're experiencing.

Yeah, Jana, duh.

I would suggest that you keep a bag by the door with a change of clothes, some snacks, water and anything else you might need for a hospital stay. You do not sound well at all. If you have to go back in, I hope someone can go with you to act as your patient advocate. For them to put you through all of that neuro exam BS while you couldn't breathe well is NONSENSE. Any activity for an MGer in that condition can put them into a breathing crisis.

I'm very sorry you did not get the appropriate care. Your only concern right now should be you. Again, not being able to breathe in is an EMERGENCY and you need to dial 911. Please, do not be shy about getting care you need!


Annie

[jana]

wild_cat, THIS is why Annie is our hero! She "cuts to the chase"!

I've known THREE MGers to die in the past year......................seems like WE (the patients) are the only ones who know to take this stuff SERIOUSLY!!