Old 09-11-2008, 07:47 PM #16 (permalink)
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Hi ... I posted before that I had an "MG crisis" because that's what my third neuro labeled it. However, I have since been diagnosed with ALS and MG is out of the picture, so I'm not really sure what happened to me in December. It was labeled "respiratory failure" but I have heart disease, too, so that could have contributed.

I was diagnosed with MG partly on the basis of this episode.

Here's what happened: I started feeling very, very short of breath one day. (I had been having neuro symptoms for over 1 1/2 years, and shortness of breath was a constant problem.) The SOB continued to get worse and worse as the day wore on. About 8 p.m., I began to panic because it wasn't leveling off, so my husband called 911, and I got ready for the hospital. I remember the paramedics arriving. The next thing I remember is waking up entubated in ICU, with no idea how I got there. (When I woke up, I thought I was in a Chinese restaurant ... I always go completely bonkers in hospitals.)

I was in the hospital for almost 3 weeks (over Christmas ... what fun!), on oxygen the whole time, and with respiratory therapy 4x a day.

Apparently I had been awake on the ambulance ride but when I got to the ER, I stopped breathing. I didn't discover that they had cut my clothes off in the ER until I tried to get dressed to go home, and found my clothes all cut in half. I ended up leaving the hospital in scrubs.

Since then, I have been on inhalers 4x a day and under the care of a pulmonologist, but my lung function is not too bad for someone with ALS.

The only thing I know for sure is that if there is any possibility of your having MG, do not mess around with respiratory symptoms. A possible MG crisis is a medical emergency.

Hope this helps. If you are having serious SOB problems and see a doctor or paramedic, tell him/her about your neuro symptoms. That is important info for them to have.

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Old 09-14-2008, 07:40 PM #17 (permalink)
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Thank you Beth for your response. I am so sorry for what you've been through. SOB has let up a bit...I will see a pulomanry doc next week.

Well, I have a potentially big development. My neuro left me a message today that my most recent bloodwork (last week) was positive for West Nile Virus. He said I don't currently have the virus but that I did have it at some point! Oh man, I hope this is what has caused my problems. He will be in the office tomorrow so I will be calling first thing in the morning.

Does anyone know anything about West Nile? Obviously I need to talk to my doc to see what he says but I am hopeful for the first time in a while! I had a lumbar puncture done on Friday so he was going to have them run a more comprehensive screen for the West Nile on the fluid if possible.

Anyway, just wanted to share that bit of news. I will update tomorrow...I have quite a headache from the spinal tap.

Tracy
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Old 09-14-2008, 08:23 PM #18 (permalink)
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Hello Tracy....I sure hope this is something treatable. Dear, you need to be laying 'FLAT", and drinking plenty of fluids with caffeine after a spinal tap....please, tell you doctor if the headache persists!

Get better soon!
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Old 09-14-2008, 08:31 PM #19 (permalink)
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Tracy, this sounds like really good news ! I'm hoping this will be the answer to your symptoms ... and that the virus is gone and can't cause any more problems.

Fingers crossed!
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Old 09-15-2008, 08:29 AM #20 (permalink)
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good luck tracy.
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Old 09-26-2008, 12:14 PM #21 (permalink)
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Hi guys!

I went to the pulmonary doc yesterday and got some bad news after a four hour visit. He had the results of my sleep study which showed that 75% of the night my oxygen levels were dropping very low. Also, he had me walk vigorously around the office and my oxygen dropped very low again on exercising. The weird piece is that I took a lung capacity test and it was fine. He admitted to me that he was working on breaking the news to me that he was sure it was neuromuscular and then I did fine on the lung capacity test and now he is perplexed. I have to go in next week for all kinds of testing.

Anyway, I feel that I am on the brink of diagnosis here whatever it may be. I can't stop crying...the doc has put me on 24/7 oxygen until he figures out what is going on. Now I'm freaking because isn't oxygen bad for you if you have neuromuscular related breathing trouble? My kids are such troopers...I had to explain why I would have oxygen on and they were like "oh mom that's gonna be kinda cool".

I'm thinking about all of you and praying that someday doctors will learn to diagnose and treat more diseases. I have been in limbo for a year and I'm ready for anything (I think). I just want to know what's happening to me.

Tracy
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Old 09-26-2008, 02:03 PM #22 (permalink)
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Tracy- I am sorry for this turn of events. Was the pulmonary doc attached to the Denver ALS clinic? I think you can trust their judgement, but you are right to second-guess a regular doc. Please keep us informed. Cindy
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Old 09-26-2008, 02:26 PM #23 (permalink)
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Tracy,

I'm sorry about your appointment with the lung dr.
Did you get the results from your spinal tap back yet?
Maybe something with this west nile thing will show up.

hang in there,
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Old 09-26-2008, 04:30 PM #24 (permalink)
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Tracy,

I hope it all works out well for you. We will be keeping you in mind.

Robert
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Old 09-26-2008, 04:33 PM #25 (permalink)
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That's hard news to hear about your lungs, and more so because you've presented your doctor with another mystery now! You've got a great attitude though and that will get you far. Just think if it was helium instead of oxygen, how much fun your kids could have. Keep your chin up, like you said, at least you're nearing a diagnosis, and that is encouraging, regardless.
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Old 09-26-2008, 04:54 PM #26 (permalink)
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Thanks you guys for responding.

The way I see it, I am gaining more and more pieces of the puzzle I am trying to solve.

I am now on my oxygen and I am trusting my pulmonary doc that this is the right move. I have a call in to my neuro to make sure he agrees but I have decided that I have to trust the docs...they have spent a lot of time in med school and me...none. And I live at 8000 feet so I'm sure a little oxygen can't hurt.

I am being tested next week for pulmonary hypertension and other disorders. My lupus test came back positive but apparentely there are many false positives. Anyway, if it was that...what good news.

The docs are still interested in the West Nile theory but not convinced. I was definitely exposed though.

Rose, helium would provide a lot more family fun than the oxygen. I just asked my little girl if she wanted to try on the oxygen with it turned off and she said "Ummmmmmm, no thanks". Maybe it's not so cool anymore.

I don't know what I'd do without this forum so........thanks! I don't feel like being anynomous anymore so I'm going to try to attach some pics of me and kids. I'll have to photo shop hubby in as he is always behind the camera (except I don't know how to do that...ha ha).

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Old 09-26-2008, 05:09 PM #27 (permalink)
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Tracy, the positive lupus test could be significant. I know you don't want to get false hopes up (and who would ever think that having Lupus would be a better option, right?) My doctors tested me repeatedly for Lupus and for Sjögren's, and even treated me for Sjögren's for over a year, with not a single ANA test coming back elevated. I think I had the rheumatic panels run six times over that period, if not more. Anyway, I know the test results aren't 100% diagnostic either way, but it certainly could mean something. Lupus likes the lungs, but also the kidneys. Any kidney trouble?

I hope the oxygen helps you to feel better, you're where the air is thin. take care,

(looking forward to the album)
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Old 09-26-2008, 05:13 PM #28 (permalink)
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Tracy-

Holy Toledo. You have a ton on your plate. We will be pulling for you and praying that the Dr's have the wisdom to put the pieces together. Hang in there!

Cindy
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Old 09-26-2008, 08:30 PM #29 (permalink)
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HI Tracy!

I was so bummed when I read about how upset you were with lung doc. I read it from my phone at my sons gym class (it is an hour and half, it can get boring. thank goodness for the blackberry) or I would have responed sooner.

BUT, this lupus is good new. I agree with Rose, only here would that be 'good news'. My docter just wrote a scrip for blood work to re run this. I tested mildly positve to the ana speckled smooth pattern( that is the one assoc. with lupus) in the spring. and had a postive esr (sed rate) but that was when I had the colon infection and then pnuemonia so I dont know if related. BUT then when tested for anti somethings and smiths something, who can keep it straight? it was fine. So I dont know if it goes up and down or not. I remeber feeling so afraid that I could have lupus, well I would welcome it these days.

It sounds like this could be a possiblity and along with exposure to west nile, you could have a virus running amuck in your body.

Maybe with the oxygen you will sleep good tonight?!

well my boys just opened thier halloween costumes, so I have a strom trooper and darth vader that want me to watch the 'jedi battle' gotto go.

I wish you the best!

april
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Old 09-27-2008, 10:09 PM #30 (permalink)
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Hey April,

You are on it girl with the Halloween costumes!

Well, the Lupus thing would give me some answers for sure...I had another blood draw today for a more in depth ANA. Also, West Nile is still a possibility.

Thanks to everyone for the support...I really do appreciate it. Thank goodness for my wonderful friends bringing dinners by or my poor family would be eating frozen this and that.

I'll keep you all posted and in my prayers.

April, I'm thinking you would make a great Princess Leah to round out the Star Wars effect...a cinnamon roll on each ear!

Tracy
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