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The bloom is off the rose but sun is shining

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Unread 02-01-2013, 12:30 AM   #1
seishin
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Default The bloom is off the rose but sun is shining

I was discharged without IVIG from the hospital this morning since the head neurologist overruled the kindhearted 3rd year resident who'd diagnosed me as having MG. (I'll be writing the resident a nice thank you letter).

I went to a friend's house for caregiving. MG was piercingly bad, I couldn't move, lots of pain mostly around neck, jaw & tongue locked, tremor pains with inhalation & then more constantly in upper chest. We called 911 and had five good looking EMT and fire department guys excavate me from the 2nd floor & take me to another E.R. There, the doctor finally did tensilon. As suspected, I noticed the difference in my lungs more than anywhere (I believe I've had MG mildly since I was a kid with lungs being the main focal point of weakness). Before tensilon, rapidly repeated peak flow meter readings were 700 to 380 three times over. After tensilon, peak flow meter readings were 700 six times in rapid succession. As suggested by someone on this board (Annie?), I took a before & after photo of my face to show facial changes with the tensilon. Yes, I too had eyelid, eyebrow & nose ptosis. Very striking the difference.

Coming back to the friend's house with suggested dosage change in mestinon, I'm still so weak it took 10 minutes to climb 13 stairs. I am more debilitated than I'd known it was possible to feel.

Interesting mysterious note, my blood pressure readings once again varied tremendously in a short period of time, ranging from 142/99 to 103/31. Of note, the more intense throat constriction hit while the latter bp reading was taking place, so I'm sure it was registering a physical change rather than a computer glitch.

The doctor felt there was not benefit to having oxygen since my airway wasn't obviously being obstructed (although he allowed me to use it the whole time I was in the E.R.) But I recalled on the way home that fatigued muscles suffer from oxygen debt which explains why I feel so much better with oxygen.

Tomorrow, I have my first consultation with the new primary physician whom I love, the one whose dad has MG & it's now his mission in life to be the quarterback/advocate for MG patients who need navigation assistance. Monday, I have my first consultation with the MG-expert neuro who's already been forwarded the tensilon results & is friends with the E.R. doctor who administered today's test. I'm hoping he'll give me IVIG or plasmapheresis to see if I can be returned in some semblance to myself.

In the meantime, my body is in agony. But the sun is shining as I type this regardless of the time of night.
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Unread 02-01-2013, 01:38 AM   #2
cait24
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So sorry you had such a rough time. Hopefully with a positive test result you will get the treatment you need. Try to hang in there and keep your spirits up. Let me know what the specialist says on Monday. Do you have a preference for IVIG or plasmaphoresis?

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Unread 02-01-2013, 02:51 AM   #3
AnnieB3
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Do you like playing musical hospitals?

Yup, it might've been me. I found that taking before and after photos was so dramatic that not even a skeptical doctor could deny it. Photos don't lie.

Is 700 your normal PFM? So then you went to nearly half that (which is when they say to dial 911) back to normal with Tensilon. Did your eyes pop open? Mine did. It was stunning. Did they test your strength before, during and after? That's what MG experts do. And do you know how much Tensilon they injected? They can give anywhere from 2 mg. to 10 mg. of it. I only had 2 mg. with a dramatic improvement.

In some people with MG, they can get even worse after Tensilon. So be careful and rest.

I had to laugh, sort of, when the doctor said you didn't need O2 because your airways weren't obstructed! That's not why someone with MG gets O2! O2, at the very least, gets your body the oxygen it needs so that the heart doesn't have to work so hard! And the breathing pattern in MG is usually restrictive, not obstructive. Did they check your O2 or an ABG?

Don't forget that MG antibodies can come and go. You might have positive ones in the future.

You must be exhausted. I hope you'll rest as much as possible. I'm glad you now have a doctor who gets MG and is going to help you. That's half the battle.


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Unread 02-01-2013, 06:29 AM   #4
seishin
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Thank you. Cait, having read so much, I get the sense I would respond better to the plasmapheresis. At this point, I'll take either. I haven't worked since Thanksgiving and only have $50 in the bank. Bills are coming due in two weeks. A friend will be lending $1,100 for monthly household expenses plus he'll cover my grocery costs. But I hope this financial generosity is needed for just one month and that I can return to work.

I forgot to mention the tensilon removed forehead ptosis, also. No more wrinkles! If only it'd fixed the bags under my eyes. My sleep has been miserable for months.

Annie, The PFM device I used only goes as high as 700 so that must be my baseline. The respiratory therapist was raving how his normal PFM is 600 so he was surprised mine was so high. I figure all those years trying to 'push through the breathing pain' to be an athlete while fighting undiagnosed MG gave me increased lung capacity.

Taking the tensilon was weird and not what I expected. At first, I was afraid it hadn't worked and started questioning whether I'd misdiagnosed myself. They started at 2 mg and I couldn't feel anything except for increased twitching in my face. The doctor tripled the dosage with the next injection and my face exploded in twitches. Twitches upon twitches to the point I could barely see because the twitches were so strong & rapid-firing. The others in the room could see the exploding spasms, too. Because the twitching continued so forcefully, I barely noticed the ease of pain in my neck and improvement at speaking and turning my head. I felt better overall but was horribly distracted by all the twitching & dizziness. The eye twitching was so relentless, it was inhibiting my vision & tempting me to close them.

It was the peak flow meter that convinced me. I finally was able to breathe in as deeply & freely as I wanted. And the fact the repeated numbers held so steadily at 700,... I felt vindicated that I truly was an athlete (having been stuck in a body deblitated by MG, but underlying, I am an athlete with heightened lung capacity).

Once the tensilon wore off and the garments of pain & fatigue returned to neck & face, that's when I noticed the dramatic before & after effect of the tensilon injection.

I've slept & do feel much better compared to yesterday. But I plan on arriving at my doctor's appointment 30 minutes early this morning and asking if I can sit with oxygen prior to appointment time.

Annie, when you ask if they checked my 02, do you mean using the clip on my finger? I've never seen that number below 95. Last night, I don't know if it even dropped below 98. And although I've asked for ABG 100 times or more from the multitude of doctors these last couple months, not one has performed ABG. Honestly, do I need to bonk heads together?

Rest is on the agenda. I'm back at my friend's house & he's being a wonderfully attentive caregiver. (He's my ex-boyfriend. I wish he'd been this attentive when we were dating. I do love the man, though. He's being amazing through all this.)
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Unread 02-01-2013, 06:42 AM   #5
AnnieB3
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Those kind of side effects can happen during the Tensilon test. They only like to do it in a hospital setting these days due to reactions people can have.

What I'm curious about is what your O2 is while you're sleeping. Mine was 94-95% on the 3rd day in the hospital but my sleeping O2 dropped down to 66%. My O2 during my crisis was initially dipping into the 70's while awake. They did 2 ABG's. Sometimes they wait until it gets to 88% or below before they do an ABG.

If you get a pulmonologist, ask if they can do an overnight oximetry. They send you home with the machine and then you bring it back the next day.

ABG's can be useful but your docs are taking a more clinical approach. No bonking heads! You are getting good care and just work with them.

I'm glad you've got someone to look out for you!
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Unread 02-01-2013, 08:49 AM   #6
southblues
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Ex-boyfriends that act like that might be worth reconsideration.
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Unread 02-01-2013, 09:45 AM   #7
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Does anyone know whether the symptoms seishin describes are consistent with POTS (Postural orthostatic tachycardia syndrome)?

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Unread 02-01-2013, 06:18 PM   #8
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I have POTS and my symptoms are dizziness, blacking out, racing heart especially in/after showers, baths, going up stairs, exertion, going up hills, dizziness when I lay down, sit up or change positions, ringing in my ears, whoosing in my ears, feeling weak and trembly and shaky. Mestinon helps my POTS a lot as does IVIG. Mine is autoimmune and part of small fiber neuropathy; autonomic dysfunction.
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