[rach73]

Gosh this forum, goes for days without any new topics and then we all have something to say LOL!

Im having a bit of a rough time of it at the moment, still waiting for my referral to London etc.

My question is does anyone else get like this .......

At the moment I am severely limited to what I can do. Mainly I can sit (but have problems supporting my neck) or lie down. I can walk but this is limited to around the house and no more than 4 trips up and down the stairs in a day. I can shower and dress, but this has to be paced with rests. But a shower at the moment is enough to bring on bilateral Ptosis.

If I go above this level of "activity" I crash. My heart rate goes into the 140's, my breathing feels laboured and I end up on oxygen. My oxygen sats, may or may not go down. When the crash happens I end up not really being able to move much, talk, everything seems very heavy. I end up shovelling more mestinon down and pray that it kicks in, which it usually does after 30-40mins. After around 1.5 hours I can resume my normal "activity" levels.

My parents were here at the weekend and it happened whilst they were here. My dad said it was almost like watching my body shut down. To be completely honest thats exactly how it felt.

Ive got to the point now where I am avoiding doing anything, as I dont want to end up in the hospital. My quality of life is really being affected.

Does anyone else suffer with such episodes?

Any replies gratefully recieved

Love
Rach

[Joanmarie63]

rach,

I don't have it anywhere as bad as you do. I too can sit and be ok, but whenever I do to much {like all us MGers} I sort of crash. Where before it was just my eyes, I now get the "heavy" feeling, the high pulse rate, shortness of breath, and pain in my left side, from shoulder to foot. When I lie down the pain gets worse, so I mostly sit. Last night I awoke at least 6 times from pain, even though I took a muscle pill, pain pill and wrapped my leg in a heat wrap. As I stated before, I don't know if MG is progressing or if we all have other illnesses that the Drs don't know about.

[sugrkiss]

Hi Rach,

I am still learning about this illness and my body...but I feel like you most days although my heart rate hasn't seemed to be affected, neither has my o2, (that I know of). I'm only on Mestinon right now, but with these symptoms, I feel like I should be looking into something else to have any sort of life. I hope you can get a handle on it soon, I know how terrifying it is to suddenly feel that way.

Jessica

[maryec]

Rach
What you were saying is just how I am exactly, & have been this way since my diagnosis. My onset was severe, & has never been under control.
I am still searching for a doctor to help me with the progression.

[bluesky]

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)

[Pat 110]

Hey Rach,

I am certainly not as bad as you are. Everything I do I have to plan it out carefully. Because of the side effects I get from the mestinon, I take them sparingly. Today I am having what I would call a weak day. After I took a shower I had to rest for 15 minutes before I could comb through my wet hair. I had to sit on the edge of the bed to get dressed. I still don't have my socks on. At that point I took mestinon. 20 minutes later I had to use a comb to wet the parts of my hair that dried already, so I could blow it dry the way I like it. I did a sink full of dishes and had to rest a few times for a couple of minutes before I got through them all. I folded some clothes on the coffee table so I could sit on the couch while doing it. By this time over 3 hours passed since I took the mestinon and I had to take another one. I wasn't up to doing much else, and rested. I will be making dinner soon and will probably need to take another mestinon by then. I have very little energy and walking around the house is slow. If I walk too fast I become winded. I believe I'm having this weak day because Saturday I went out for breakfast and walked quite a bit around the Farmer's Market...something I really enjoy doing, but may have overdone it a bit. I will probably feel much stronger tomorrow...if not I'll just rest most of the day. Hope you have a better day tomorrow.

Hugs,
Pat

[AnnieB3]

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

[redtail]

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

[MissGomes]

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!!

[rach73]

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