I am having respiratory alkalosis (overbreathing) says the last ABG's due to very low negative inspratory force (NIF). It is intermittent and comes in on and off at rest and moving, eating or talking since Saturday. The cause at this point is unknown. May be stress or CNS lesions, etc.

My NIF is -12 to -18 (normal for me is -60) but my vital capacity is normal (3) and I hear I am making up for a weak diaphragm by overcompensating by breathing too much. I had in-the-booth PFT yesterday and my diaphragm functions are at 15-20% capacity.

Neuro thought it possible that a stress reliever, like ativan, would reduce the overbreathing waves which it has a bit. He also said this alkalosis is a cycle that could cause intracellular shifts that could make MG seem very bad. But trying ativan has not effected all the other issues such as the mass of MG symptoms I currently have: increased choking, loss of strength all around, fatigue, bad ptosis, etc. I just mostly feel tired and I was not anxious anyway.

I went to the ER on sunday and they sent me home saying I was not in acute respiratory failure and that was the criteria for MG admission. They thought this was unrelated to MG even though I had all MG symptoms.

Can I just go around with a NIF that low?!! Will it freeze up at some point?

Any thoughts or insights would be greatly appreciated.

I'm sorry you can't get a solid answer on what is going on. It might be time to see some other specialists.

When was the last time you had an echocardiogram or a stress test? Have you had either? Muscle weakness is not the only thing that can cause difficulty with breathing. It would be a good idea to be evaluated by a cardiologist.

Have they done a brain/neck MRI? Did someone say you had CNS lesions? Have they done a differential on "fatigue," not the weakness but the sleepy tired variety.

Ativan can make MG worse, so please be careful with that drug. Have you read the prescribing info on it? It's sort of funny how that's their "go to" drug of choice anytime a patient looks or acts anxious, even on an ABG. When in doubt, go for the "psych" diagnosis!

Are you anemic? Have you had a bunch of basic testing done lately by your primary doctor?

Do you have copies of any metabolic panels they may have done (venous serum, not the arterial blood gas)?

Something is "off" and what you don't get in an emergency room or hospital - at least not very often - is diagnostics. It's as if they're allergic to diagnosing anything. So, you'll have to see some other doctors to get to the bottom of this. Just don't wear yourself out into another crisis!

Seriously, I might be concerned about things like pulmonary hypertension. MG could be causing this mixed breathing results though.

I really hope you can get answers soon. You've been really struggling for a long time.

Annie

Annie to the rescue!! I had an stress test with echo last fall when I was having bpspikes and tachycardia and they had to clear me for thymectomy surgery. It was normal but put me into runs of tachy to 160 after the test. Then my heart stayed at 120 for over 2 hours but then came down. A 26 day monitor showed normal sinus tach and a lot of it. They wanted a beta blocker which are relatively contraindicated in MG and I noted that mestinon seemed to control it. We still are using mestinon. I just found out this week, it might be working for me because it stimulates the parasympathetic nervous system to counterbalance the sympathetic action of the other going haywire. Neat!

They just found a few new lesions on my brain MRI a few weeks ago that could be migraine or a demylenating disease. I have a spinal tap tomorrow that I am not happy about : (

The ativan just makes me tired since I am not anxious but it is slowing the waves of breathing that were coming on and off a lot more often than they are now. The rest of the symptoms are still all there.

Not anemic. All bloodwork just checked and supposedly all good.

metabolic panels? Like what would that include? They have done so much...

I had an EMG for the numbness and tingling too (just the peripheral neuropathy) and that was negative. Neuro thinks it is more of a signal issue that permanent nerve damage. I also have numbness around my breasts and chin. The lumbar puncture may be telling...

Thanks, Debra.

Well, I hope you will get your vitamin B12 and homocysteine and methylmalonic acid checked (or rechecked). A deficiency can cause lesions too.

I hope you will be VERY careful after the lumbar. Make sure you keep drinking fluids, stay still as much as you can and keep up on the Tylenol. ANY new symptoms should prompt you to call your doc or go in.

Metabolic panels basically show your electrolytes, protein, kidney/liver functions, etc. Some of them do not do magnesium and phosphorus, which is ridiculous since all electrolytes are important. Get copies from the hospital!

An EMG will not show the peripheral neuropathy damage usually. They have to do more specialized testing. I have had a neuropathy since my B12 deficiency and it does not show up on an EMG. It's there, bugging me every day! Mrs. D. would have a lot more info on that or the peripheral neuropathy forum here too!

http://www.91outcomes.com/2010/01/ne...eripheral.html

When you have any kind of surgery, there will be peripheral nerve damage. The very best way to ensure healing is to take at least a 5 mg. (5000 mcg.) sublingual tablet of B12 twice a day. Frankly, you should take more like two tablets three times a day. It helps heal anything faster!!! I like the Jarrow Formulas sublingual methylcobalamin. Again, you can get vitamins at a discount from www.iherb.com where I have been shopping for 11 years. If I forget to take my B12, my PN will flare. But that's because I didn't get sufficient treatment after my B12 deficiency and it wasn't soon enough. It did help heal me after I had surgery and after my muscle biopsy.

Well, I hope you get things figured out. It stinks not knowing. At least if you knew what you were dealing with, you could figure out a way to get better.

Annie

I fully agree with that. From my experience, when physicians start giving conflicting information, unreasonable explanations or suggest emotional problems, it usually means that:

1. they don't know what the heck is going on.

2. they don't have and don't think they should put the efforts to have a reasonable explanation for it.

3. They aren't honest enough with themselves and you, to admit that this is beyond their level of knowledge/experience.

The answer is yes, you can (as obviously you are) but why should you?
why should you suffer from weakness, fatigue, breathing difficulties etc. and made to think you are "anxious" (which most likely you are. who wouldn't be when suffering from such symptoms and receiving confusing and conflicting information, instead of proper help and support?)

And I agree with your neurologist that it is a viscous cycle, but not the one he thinks. You feel unwell and you come for help, after which you are also made to doubt yourself and feel that it is up to you to find the answers they are incapable of providing. As if it is not hard enough to deal with this illness itself.

Hope you do find some reasonable answers soon.

Thanks Alice and Annie...I am taking it all in.

The only thing that has changed is that the breathing has no more fast pacing anymore so now that it cannot be said I have any overbreathing. How safe is an NIF that is still maintaining under -20 though?!

I feel odd. I don't know how else to describe it....maybe a little slowed. And I am certainly not my sharp self. So, now that I am not overcompensating, what does that mean? I am still weak all over (which started suddenly with the breathing issues) and my IVIG does not start until Tuesday. Currently, I am not feeling particularly out of breath anymore though either. I am so confused. Btw, I am dizzy or light-headed on and off also.

How can I tell if I am in trouble?

Forgot to mention: the 1st round of ABGs--the ones done in ER (I found out later) showed an oxygen level of 60 something and I heard it is supposed to be 90 something and they should have had me on oxygen and kept me but they just said I was fine and overbreathing to make up for a low diaphragmatic function and to go home.

1)they 1st said get to the ER if NIF falls below -20, so I went. Then:

2)they said go home, you are fine

3)NIF has been below -20 all week

4)now breathing is NOT overbreathing, so does that change things if NIF is still at below -20?

So, I don't know how to know when it is impt to go in or not!

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.