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)