Debra, This is a complicated issue and it's not clear if it's from MG or MG AND something else. A simple answer to your question of "How do you know if you're in trouble" is: If you can't take a breath in (or out), you're in trouble.

Simply because they can't figure it out does not mean you don't need "symptomatic" care, like oxygen. Did they give you any tips of what to do? The list of "differential" causes is long. Again, you should get your recent records so that any doctor can see them and try to figure out what is going on. I have no idea. I hope you can find a doctor who can help you figure it out. Did they do a D-Dimer? Check your thyroid? Have you seen an endocrinologist? How do they know this isn't metabolic acidosis that has brought on respiratory alkalosis?! You need to be checked out when you are "normal" too so that they can see a trend.

You had an echo last fall but it's been a year since then. Things can change in that amount of time, especially post-surgery. I still think seeing cardiology would be sensible.

Don't get overwhelmed by this info. Think of it as a reference only. These articles don't contain everything possible and it might drive you nuts just thinking about it all. Just get a good doctor or two right away to help you! I hope you'll have an uneventful weekend, aside from some fun.

Annie

http://emedicine.medscape.com/articl...overview#a0104

Causes

The differential diagnosis of respiratory alkalosis is broad; therefore, a thorough history, physical examination, and laboratory evaluation are helpful in limiting the differential and arriving at the diagnosis.

Central nervous system causes are as follows:

Pain
Hyperventilation syndrome
Anxiety
Psychosis
Fever
Cerebrovascular accident
Meningitis
Encephalitis
Tumor
Trauma

Hypoxia-related causes are as follows:

High altitude
Severe anemia
Right-to-left shunts

Drug-related causes are as follows:

Progesterone
Methylxanthines
Salicylates
Catecholamines
Nicotine

Endocrine-related causes are as follows:

Pregnancy
Hyperthyroidism

Pulmonary causes are as follows:

Pneumothorax/hemothorax
Pneumonia
Pulmonary edema
Pulmonary embolism
Aspiration
Interstitial lung disease
Asthma
Emphysema
Chronic bronchitis
Miscellaneous causes are as follows:

Sepsis
Hepatic failure
Mechanical ventilation
Heat exhaustion
Recovery phase of metabolic acidosis
Congestive heart failure

I really don't know what they did as far as test, like d-dimer. They just said everything was fine and btw, it would take too long and I have to go through hell to get records. I talked to oncall neuro last night who said to just go back in. It seems easier to get records fast that way.

I am not overwhelmed by the info from you. My doc is really leaning toward stress (just hoping really) or CNS lesions causing this (although I don''t see that on your list, I did see a whole thing on it elsewhere and I have a lot of those symptoms).

Yes, I saw an endo who said it is definitely not their area. Thyroid is fine and no hormone stimulating tumor.

I was very confused last night and having trouble following conversations, even more than having any breathing problems and just so hazy-headed that we decided against going in and went for sleeping early. Breathing seems better this morning so far. It is so up and down I cannot get a handle on it so I feel like I don't need to do anything and then an hour later, I do again. So confusing but even still, it is not near as bad as last weekend when I could not eat or speak without being winded.

Also, I started with jaw tightness and aching on the left yesterday that is still there this morning. Is that MG related?

I can only try to give you advice based on my own experience, both as a patient and as a physician.

I think you are at a point in which you have to make a serious decision:

either you trust you physicians and are just frustrated with the time it takes them to understand what is going on, or you feel that you can no longer trust them.

Only you can give yourself the answer to this question.

If the former is right, than I think you should keep them updated on your condition. If you feel that it is worse, then call them, go to the ER or what ever it takes to make them understand that you are not doing well and not just "stressed". Medicine is not an exact science and physicians can make mistakes, mostly in rare and unusual presentations. An open avenue of communication allows their timely correction. I can give you quite a few examples from my own practice for that.

If the latter is right, and you feel that what is going on is beyond the level of expertise or your physicians then you should seek another opinion. There is nothing wrong with doing that. Sometimes another pair of eyes can see what someone else has missed (this is true for everyone, and also for physicians who are just people). Also, you may reach someone who happened to have a patient similar to you. (again, I can give you examples from my own practice, in which I made a diagnosis that was missed by others just because I happened to be aware of that problem).

I think that you need more than our advice on the internet.

What is going on is clearly not simple and straight forward. Many times there are complicated acid-base disturbances that may not be readily evident. There are various metabolic diseases that can give clinical symptoms similar to myasthenia, and are accompanied by other findings, such as brain lesions and acid-base disturbances.
Like Annie said, there are many possible things that could be going on. I can "throw in the air" some possible options that could explain all your symptoms and your myasthenic clinical picture, but I may be totally wrong, without knowing all the details.

All I can say, is that I was never ready to accept unreasonable explanations from my treating physicians. It is not easy to reach this conclusion and every time I initially tried to convince myself that I may have misunderstood or got it wrong. Yet, as a physician, my approach was that it is the patient that knows best, so I took the same approach with myself. As hard as it was, taking this approach was eventually rewarding-

After a year in which I was nearly bed-ridden and required frequent respiratory support, I was gradually able to resume at least some of my previous productive life.

I didn't get to read your post, Alice, before I ended up at the ER again yesterday (3 hours after I wrote) but I think it was a combination of factors. I do trust my neuro but in this particular case, there was something he wasn't getting and I really needed another set of eyes.

Yesterday morning, I walked from the bathroom to the kitchen table and started panting for 15 minutes and tried to eat but was too winded. Left for the ER yet again but this time, I FINALLY got the help I needed.

They did an EKG (normal), chest X-ray (clear), blood and urine (fine), and ABG's showed the same hyperventilation although slightly less bad than the last one. I had stopped having any rapid breathing for about two hours before it was taken so I found that confusing but suffice it to say, I could be breathing shallow at night too. I guess it takes a long time to get the numbers as screwy as mine.

The only thing they could see as a potential issue was the d-dimer: it is not supposed to be above 230 and mine was 604 so they were concerned I might have a pulmonary embolism. I couldn't have contrast so I had to do a Q scan of some kind with radioactivity to look at the lungs which were crystal clear--thankfully. They never figured out why it is high but I guess the test is non-specific.

They also didn't know why my heart was between 90 and 135 for 9 hours the whole time I was there. But then, surprisingly, a neuro resident arrived who spent the entire afternoon trying to figure out what was going on with me. Strength awful, could not lift legs higher than 5 inches from the bed, could not get up from a squat. Bad.

I am still on 25mg tramadol from my thymectomy surgery and I cannot get off of it. Back in March, I was breathing at 30-some respirations/minute for a week due to tramadol withdrawls (see post: breathing problems...need input please). This neuro said she thought I could be having tramadol withdrawl every single day. The dose cannot last long enough to get me through to the next day and it is true that I am at my worst in the morning. She said to try a tiny bit more in the later part of the day and see what happens.

I popped a 1/4 of a tramadol (12.5mg) and came home. 2 hours later, I started feeling different. My heart rate was down to 63. My hoarseness stopped altogether. I checked my strength. I was stronger, a LOT stronger. I was able to get out of a squat with no hands. I checked my NIF and it was at -38. Unbelievable. Not only is it controlling my respiratory system, it is making my MG look like I have totally fallen apart.

I stopped the ativan since I didn't need it and it wasn't doing anything.

This morning, I feel entirely different. I have energy. I can still get out of a squat and my body feels strong after and entire week of weakness. My incentive spirometer is at 2200 from 1300. My NIF is over -40. My bp is 104/72 and pulse 65.

I am feel so blessed that someone took the time to dive into a complicated case and come up with a solution that was very much outside the box and also correct

http://neurotalk.psychcentral.com/sh...light=tramadol

That's the old post.

Debra, That still doesn't explain the very high D-Dimer. I don't want to scare you but do you have a cardiologist? Can you please see one immediately? You may not have an aortic tear but a d-dimer can be elevated in that very serious condition. It may "just" be the tramadol withdrawal but please get a doctor to do a differential on the d-dimer! Ruling out a pulmonary embolism does not mean there isn't a clot somewhere else. PLEASE take that seriously.

http://en.diagnosispro.com/different...30680-154.html

I hope you'll be okay.

Annie

I am so glad that you are doing better.
It sounds like you were very lucky to have an excellent neurology resident. It proves again that taking the time to listen and think is more times than not more important than diagnostic tests. (which can also be misleading).