Hi. So I'm in the hospital for the first time and I asked the resp lady if she was going to have me do a walking oximetry or arterial blood gas. She said they don't really do the abg anymore, that it's been replaced basically by newer breathing tests or diagnostics. Is that true? I also haven't done a walking oximetry, although I've done plenty of inhaling & exhaling into measuring devices.

Should I be making a noise about these tests?
If applicable, what about the abg can't be replaced by other respiration tests?

Thanks, you guys.
This board offers so much support & information. I sure am thankful you're here.

Are you having fun yet?

An ABG can be useful, especially for those patients who can't breathe into a damn tube! They are still used but it's not necessary if they believe they have a good grasp of what's going on with you, your muscles and your breathing. Venous carbon dioxide, however, is not as good a measure as arterial CO2. I wouldn't push the issue. They are taking you seriously, so let them do it their way.

Have you spoken to a pulmonologist? Have they showed you the results of the PFT's (did you ask to see them?)? Let the O2 walk go too. My pulmy always does it but that's her. She is thorough. You're in a hospital and all costs are like triple of what they'd be in a regular doctor's office. They're probably trying to find the best answers with the least amount of tests, as per usual. Don't sweat it.

And try to get some sleep!

Annie

seishin, so sorry you are in the hospital. Was it breathing problems that sent you in? What are they doing for you and are you feeling any better yet?

kathie

Kathie,

Thanks so much. I'm actually thrilled to be in the hospital so I can hopefully get to a functioning capacity. Yeah, my breathing started becoming more impaired this weekend and I was feeling lightheaded all the time, having to pause with stairs, the sternum chest pain was expanding and affecting the core muscles also. I drank water a while ago & I swear it took a few seconds to feel it trickle down my throat. I was becoming very concerned.... I've had a constant sensation of my throat closing since November but now the sensation of being strangled was becoming overwhelming... as if a rubberband were around my neck. My bp was getting crazy high, too. I'm just grateful my new primary doctor intimately understands MG (his dad has it) & was able to get me into the hospital (E.R. turns me away when I go on my own).

I'll start IVIG today unless the neurologist changed his mind. In the meantime, I'm on oxygen & that seems to be helping to a degree. I look forward to earning an income again.

Keep us posted with your progress and let us know how the IVIG goes. You are lucky to have a GP who understands MG so well.
Rest up.
kathie

Seishin, I just read your test results. You need to ask the doctor about possible liver issues before you have IVIG. And they need to determine the exact cause of the CK before that too!!!

The liver and kidneys filter out drugs, among other things. They need to be healthy and in working order. Have they discussed any findings with you (I'll say more on your other post)?

Just be careful. You do need medication but they need to consider it within your entire health picture.

Annie

Sorry your in the hospital, but glad your in the hospital so you can get some help!! I remember the sense of relief I felt when I got admitted, as I had been struggling for so long!!

I couldn't pucker my lips around the PFT's for testing initially, but they are monitoring you it sounds like so sounds like your finally getting some help!!

Keep us updated, drink tons of water for that IVIG!!! I'll be sending you positive thoughts your way!

Frustratingly, false alarm for additional treatment. When the neurologist came by again this evening to test my strength (not fatigabiity), my muscles were strong, even my voice was basically normal. My bp was in a normal range as was my heart rate. My 02 levels from the clip on the finger have not been below 95%, even when my bp was really high. I no longer have the sensation of being strangled and am back to the ol' reliable throat closing I've had steadily since Nov. They decided to send me home. I tried discussing cbc results with the neurologist to find out about bili & CK but they said I'd have to ask someone else since that's not in a neurologist's bank of knowledge. They wanted to send me home this evening, but no doctor had really discussed anything with me, news was being relayed through nurses and I wanted to get questions answered. They decided to keep me overnight until a doctor is available in the morning to speak with me.

In the meantime, my bp dropped into a normal range than continued lower than I've ever known it to get (90/60+ is normal, this was 90?/55) and my voice has gone soprano & failing again despite the oxygen & mestinon. I still have shortness of breath & muscle fatigability but not to burnout. I wish they'd do the IVIG but I guess since this isn't a 'crisis' they want the MG-expert neurologist to look at me Feb 4 to figure out a treatment plan. Although I'm disappointed, I guess I should be happy given the thread's comments about how expensive IVIG is in a hospital. It's also nice because they put me in a hospital suite with a private shower and guestroom (not that I need the space but the shower is appreciated. I was a hospital virgin so it's a nice first-time accommodation.

I'm still concerned about breathing once I get home, especially at night since I don't have any oxygen or breathing assistance yet. But I'll talk to my primary doctor tomorrow (the one intimately familiar with MG & self-appointed "quarterback" for me). I need to learn to let go the reins of my own inept attempts at leading & begin trusting that someone else can guide & make sure I'm doing what I need when I need with whom.

By the way, when I called the Feb 4 neurologist for more specifics on what type of diagnostic testing he'd be doing that day, the receptionist changed her tune from what she'd told me previously. Whereas before she said all diagnostic testing would take place that first date & there was no need to schedule an additional appointment for diagnostics, now she's saying the first appointment is just a consultation. So this process will be dragged out longer. Concerning to me since I have no income & bills will be coming due mid-Feb (I'm having to appeal short-term disability denial.)

sorry to hear that, but glad that you get to go home, but sorry that you didnt get IVIG - and yes it is expensive - my hospital bill was SOOO MUCH! ouch! thank goodness for insurance, though that was 18months ago and I'm STILL paying what I owe! I'm glad they are setting you up with a neuro as well.. and that you have a primary care dr that you can trust and will go to bat for you! that's so important!

it is so frustrating to have an appointment and they run tests, and you have to wait to see what the results are and when they get back, they run more and the process drags out, all while you dont know what the next day will bring.. be careful.. are they going to keep you hooked up on a pulse ox throughout the night while you sleep? I think that would be a good idea to make sure it doesnt dip down... Good luck!!

Annie, I've asked three doctors about the high bili and Total CK numbers. They've told me it's nothing but I'll ask again in case they're just unaware.

Why order the tests if you're not going to question WHY numbers might be out of range?