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08-02-2009, 07:32 PM
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Hey hon!
 I'm so sorry to hear you had to go BACK to that horrid place! I hate the hospital too! Just too darn scary for me! When I was @ the Methodist a while back, I too was the "guinie pig" for the nurses....I was sweating bullets! LOL! It is AMAZING that you met so many people with MG - can you say AMAZING? What are the odds? I hope this post finds you strong and HAPPY! I'll keep praying for you, sweetie! Love, Erin  Quote:
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Erin . |
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| "Thanks for this!" says: | Nicknerd (08-02-2009) |
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08-02-2009, 07:47 PM
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#12 | |||
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Hey Annie,
They do the FVC test while I am sitting up...My oxygen saturation is also normal when walking (or at least it was before my surgery)...They didn't really test that this time, only when resting... What's MIP, MEP, and ABG? I was thinking of asking them if they did the arterial blood gas test, too, but again, I was thinking that I was being to inquisitive and trying to tell them what to do, or something...Maybe it's the way I ask...I'm kinda a nervous person, and might come off as highstrong...*must calm down* lol I'm sorry that you had the crisis, Annie...Have you had just the one? Were you put on ventilation? That must have been so scary...When I was having the trouble breathing, it was more only when I was talking and a bit when walking...Just felt breathless...At rest, I was/am okay... I'm still feeling pretty weak...They had to cancel my plasmapheresis today because I keep getting this strange 'attacks' where I'll just be sitting, reading or doing whatever, perfectly calm, and I'll suddenly get a rush to my head...My heartbeat will feel heavy, my vision will become very blurry, and an hour later, my stomach will get very upset and I'll eventually have diarhrea (?sp.? and sorry to be so graphic)...It'll last for about 4-hours....It's really frightening and the doctor has no idea what's causing it (my vitals are all normal)...The one thing that comes to mind, is that my BP is usually on the low side...about 90-100/60-70...When this happens, my BP will be 120/80 or 140/80...those are still normal stats, but not for me...I have no idea what's going on...Maybe my BP is going up because I'm scared, or maybe it's the cause...not sure...I also wonder if I'm getting too much mestinon now...I take 60 mg every 4-hours and 180 time-release once a day...Seems like a lot, maybe... Argh... Anyway, sorry to be pouring this on you guys...I just really want to get out of this hospital and back to feeling better!  Ttys! nicky |
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08-02-2009, 07:54 PM
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#13 | |||
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Thanks so much, Erin! I read that you were back in the hospital and the ordeal that went on! It really is boring and kinda depressing being at the hospital, but at least we're safe when we're not feeling well!
I know...I just can't believe that I ran into these people...I am especially impressed with the nurse I met...She looks and sounds terrific...It gives me so much hope...This nasal speech has been my strange bedfellow for so many months that I feel like I'll never get rid of it...But hearing how clear her speech is is truly refreshing...Can't wait to be able to sing again *crosses fingers, knocks on wood*! I hope you are feeling better, too, Erin! You really deserve to be back on track! Btw, have they ever tested your Immunoglobulin levels to see if they're up-to-par? Maybe that's why IViG works so well for you usually, and why you're so prone to the infections... ttys! Nicky |
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08-02-2009, 07:55 PM
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#14 | ||
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Grand Magnate
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First, did you read the part about a possible blood clot in your lungs?!
 That absolutely needs to be checked out.ABG is arterial blood gas. MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure) measure specifically neuromuscular weakness. I've only had one crisis but a lot of exacerbations. I was not intubated, was not put in the ICU even though my O2 stats were dipping below 80%, was not given treatment until FOUR days later . . . it's a long stupid story. When they crack open your chest, they can mess with the vagus nerve. It sounds a little bit like that. But, again, they need to check for a pulmonary embolism (blood clot) if they haven't already. Have they done an ECG? It may be the time-release Mestinon doing it to you too. My neuro would not give it to me because it is too unreliable and can overdose you. Depending upon how much stomach acid you have, how you metabolize drugs, etc. Are you hydrated enough? Here's one more thing to know that will bother the docs. They can run a serum osmolality on you to see if you are adequately hydrated or over hydrated.  Hydration effects the blood pressure/pulse. I hope you get better soon too. Annie |
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| "Thanks for this!" says: | Nicknerd (08-03-2009) |
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08-02-2009, 08:07 PM
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#15 | |||
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Hey Annie,
I did read the part about the pulmonary embolism, but it freaked me out! I will ask them about it, for sure...This isn't the first time the 'rush to the head' thing happened, either...It's just that I have so many symptoms, that I forget about them all when it's time to deal with it...I've been having these little attacks since March, randomly...Can you have a blood clot and normal vitals? Also, would an xray/ct scan show it? I had an xray done last Wed., and a CT done about 3.5 weeks ago...I know that my platelets are very high, but that's only been since the surgery...All the other CBC tests are abnormal as well...I got a print-out of all my info. since 2007...After surgery is when everything got weird, although I've always had high platelets, but still in the normal range... i also get a heparin shot everyday.... P.S. Are you a nurse? If not, you should be one!  (I think I already said that before hehe)...nicky |
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08-02-2009, 08:47 PM
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#16 | ||
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Grand Magnate
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I'm sorry, please don't be freaked out. Yes, you can have normal vitals and have a PE. There's a specific kind of CT they do with Iodine contrast to look for a PE. Iodine is relatively contraindicated in MG.
That's good that you get printouts of everything. Sometimes they don't tell you things or dismiss them too easily. Yeah, too funny. I would NEVER be a nurse or doctor. I am a designer and writer - well, I was in a former life. Drs. have way more knowledge than I ever will. I think it's the creativity and common sense they are lacking - which is a shame. It's not knowledge that's important, it's how you "see" it that matters. You don't need to be stressed out right now, so I'm sorry if I'm adding to it. The first time I had a "positive" D-Dimer was after surgery, which can be absolutely normal. It has to do with fibrin, etc. that's needed for healing. A good doctor will know that a slight elevation is not a big deal. It's when it's really elevated that they need to do more. I'm glad you're on blood thinners already. Maybe see your primary doc when you get out about those "episodes" and/or talk to your docs there in the hospital. You just take it easy. Annie |
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| "Thanks for this!" says: | Nicknerd (08-03-2009) |
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08-04-2009, 04:47 AM
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#17 | |||
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Hi Nicky,
thinking of you as you sit in hospital. Hope you are soon home in your nice comfy bed with all the comforts of home. There really is no place like home take care Kate
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Outside of a dog, a book is a man's best friend. Inside of a dog, it's too dark to read. Groucho Marx |
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| "Thanks for this!" says: | Nicknerd (08-04-2009) |
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Hi Nicknerd!
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