Hi Rach,

Wow, you could have been writing about my life! My days are very much like yours - except when I'm in a wonderful remission. I love those.

I started a new crash about three weeks ago and I've been watching very closely and recording data with my recording oximeter. At first, especially when I'm active (by that I mean mg active which is another person's having a very slow day, lol) only my heart rate goes up but my oxysat stays the same. When I was at my doctor in August my oxysat was 96 but my heart rate was 128 and stayed there the entire hour even though I was sitting (I got the usual "you're anxious", "no I'm not", "yes, you are", "I can assure you I'm not" "well you need to be evaluated for anxiety" stuff from the nurse, luckily my doctor's on board that there's something seriously wrong with me). Anyway, as the crash progresses the heart rate stays high and oxysat normal when active, low oxysat slightly high hr when sitting, much lower oxysat, slightly high hr when lying down. Then, everything goes haywire. I looked up some of my recent reports for you and they look like this:

Up and about, dizzy, mental fog: 65.4% < 95 (oxysats), 4.3%< 90, hr:40-123

Sitting: 77.6%<95, .2%<90, hr:118 but steady

Lying down: 90.1%<95, 8.5% <90, .3%<85, hr: 93 and steady

Also in a crash my arms get weak. Not so weak like you that I can't use them but it feels like I'm holding a heavy dictionary when in fact I'm just trying to hold a magazine. When I'm reading, I'll rest my entire arm on a pillow otherwise I cam't do it. My neck feels tired from holding my head up and my hands will shake. Blow drying my hair is out of the question as is putting on makeup. Like you, showers do me in. They always result in ptosis, actually it's often half of my face falling down, and they leave me utterly exhausted. I feel like such a weirdo having this almost fear of showers! Or baths. Let's see what else - my muscles twitch and spams especially in my legs and I'll get muscle pain in places. Sometimes it's my upper back, often in my thighs at the end of the day, right now it's in my lower back. Just exhausted and overworked muscles I think. Oh ya, and my vision gets very blurry.

So, yes, I get into that same "trapped" condition that you do. If I do much activity my heart rate goes way up, too far up. 140 is not unusual for me either. My heart feels overworked, my breathing is hard work and I have to stop what I'm doing. Worse, if I am active it will make me worse all over - sitting, lying down whatever it's harder breathing and lower oxysats. Also like you, sometimes it will just be a high hr and oxysats normal. Particularly, as I say, when I am upright. Sitting and lying down causes pressing against my lungs and usually results in lower oxysats though. For a while, before I tested positive for mg or had even heard of the disease I thought I had dysautonomia bc when I stood my heart rate would should to as high as 150 and stay there while I felt dizzy and weird.

Anyway, I'm sorry for what you're going through, but I wanted you to know that you're not alone. I think that you suffer from more muscle weakness than I do, but the difficulty breathing sounds so much like what I have. I really, really, really hope that the doctors can help you in London. I have an appt with an mg specialist at the end of this month and I'm hoping so much, so very, very much that I will get a diagnosis. Or at least a good direction to head. Well, you know exactly how I feel I'm sure!



Bluesky (Ally)

Rach, I think you know what my answer will be: You are in serious trouble!!!

You too, Ally!

Mary, Who are you going to try to see?

I am drop dead serious, Rach, I'm afraid they are going to kill you before they buy some clues and help you. MG is all about weakness upon exertion. The worse the MG, the worse it gets with the littlest exertion.

This is serious too . . . you need to drop doing anything. And by that I mean EVERYTHING. And you have to do that for a week at the very least. No doing dishes. No going for walks. NOTHING. Without appropriate meds, that's the only way you will get better. Rest in bed and take trips to the bathroom. That's it. During my crisis, that's what I had to do for the first three weeks in order to feel better. And I was on meds.

And to get even MORE serious, you are about a hiccup away from a breathing crisis. Crashing quickly is what happens right before someone with MG can't breathe. And I mean it can be seconds before. You need to see someone NOW. And I'm not being an alarmist here. Go to the hospital where they treated you well and get someone, anyone, to help you. This is crazy, seriously crazy.

We don't want to lose you and that is where you are headed if things continue like this. You do not want to be intubated. It takes much longer to recover the worse you get. I wish I could swear right now because I am so angry.

Please, don't even type a response! Just stay cool and rest. And then let us know how you are. You'll be in my thoughts.

Annie

hi Rach,

when I was first diagnosed about 7 years ago, a shower would send me to bed, still in the towel I used to dry myself ffor at least half an hour, washing my hair even longer. I would lay and relax before I could sit up, another 5 minutes, then dress myself, another 10 minutes or so. Washing dishes exhausted me, hanging out clothes was also exhausting. I use to plan my week so I did something every second day, or not depending on my strength, and if at the end of the day i was exhausted dinner usually consisted of a glass of milk.
I am so much better now, this morning I washed my hair and did the vacuuming, but my hands are struggling to type, so I'll take the rest of the day easy.
Hope I havn't prattled on and not answered your question, my brains on standby mode, as I havn't been sleeping well :-)
Kate

Very scary!! I hope you both get well and take heed to the advice!!

I am just wondering will you always be like this or with rest will you come through this in better form? My heart is with you both. Good luck!!

I would just like to say thankyou to everyone who responded to my post. It was very kind and sweet of you all to do that.

Im still having a really crappy time of it and have ended up on oxygen for over 3 hours today. Luckily the hose / tube is long enough so the concentrator can stay downstairs and I can use it upstairs in bed.

Im cutting down on all activity, but its so depressing. I know Im probably a gnats whisker away from being hospitalised, so I will apologise in advance if I don't put my two cents worth into posts on the forum. Rest assured I will try and read them!

Im just not vey good at doing absolutely nothing, it drives me insane!

Thanks again for your support it is appreciated.

Love
Rach

hope you feel better.

Rach, I know EXACTLY how you feel! I spent a MONTH in bed with the same sort of mess until I had to be taken to ICU!

At this point you need - absolutely have to have - someone with you ALL of the time - no joke!

Stay in BED all of the time - do you have a bed pan? Rest, rest, rest! I know how you feel about being bedbound, but it truly is a MUST until you are on meds!

WTH are those stupid docs thinking? This is absolutely insane! You need help now!

Hang in there sweetheart! Please stay in bed and don't lift a finger for anything! It's just not woth your health!

Know that I am sending a ton of love and prayer your way!

Love,
Erin

Oh boy, Rach...I'm so sorry that you're going through this...What are your doctors doing? I know that you were planning on seeing someone in France...Are you still trying to pursue that? This is a terrible way to be suffering...When my heart rate goes up to 110, I freak out...Those palpitations are the worst...Why isn't anyone helping you with this? It's dispicable! There are plenty of MG patients who are seronegative, with no thymus abnormalities...They base the diagnosis on a positive response to mestinon, which you've obviously had....

All that I can say is don't give up! You are going to find out what's going on, and someone is bound to listen to you...If you were seeing my neuro., you'd have had a plasma exchange by now! I wish that you could get to Toronto somehow...I will pray that you get the help you need...Try to relax and take it easy...Don't lose faith...Someone will help soon!

Nicky