Hi,

just thought I would start by saying all responses will be gratefully recieved!

As some of you know Im using an oxygen concentrator at home. I use it as soon as I feel breathless rather than wait for my oxygen levels to drop.

I need to know Im not going mad, just looking for some reassurance. Today I was feeling pretty rotten hardly surprising. I was feeling a tiny bit breathless, had that awful fog and fatigue. Oxygen sats were 99% on air. I thought I will put my oxygen on and see how I go. An hour and a half later Im feeling so much better, mentally clearer, breathlessness has gone.

I just need to know that Im not experiencing a placebo affect with the oxygen. That it is making me feel better because I need it. Sorry this probably seems really really daft!

But you know how you start doubting yourself when you are on the diagnosis merry-go-round.

Thanks

Rach

I don't use it but my mother does and I can say it really, really helps her. Just don't use it as a crutch and it should be fine and you know what? even if it is just mental, if it works, don't worry about it.

I am glad that it helps you!

Hey, Rach. Did you check your oxygen saturation while you were walking?

O2 saturation doesn't tell the whole story. It's a good indicator but arterial blood gas, along with a clinical exam and O2 sats is the best way to tell.

How is your pulse? Is it high while you are at 99%? That would indicate that the heart is working harder to get you that 99%.

I very much doubt it is a placebo effect!

Just use it when you need it!!!

Annie

Rach, honey, you are NOT daft! You are ill! You have had to deal with ignorant doctors - it is not you - it is THEM!
I was told the same thing by my own FAMILY and started to believe I really was - until I ended up in the ICU (for 8 days) where I received a blood transfusion, IV IG, fluids, steroids, you name it (!) and my blood pressure dropped to something like 70/40 and was woken up by a Dr who told me I would "probably" need a pacemaker!
It makes me soooo angry that you are being treated this way!
Please don't doubt yourself, honey! You ARE sick! You need MEDICAL help!
I don't want to offend anyone, but I truly believe that if you were a MAN you would be taken much more seriously.
I went in YEARS ago with fatigue and was told I was "depressed" and was given antidepressants - this from a very smart Dr here in SA. All of my problems were dismissed until I wrote them down and gave them to my GP - she is one smart cookie and KNEW what I had. SHE had faith in me!
I remember crying my eyes out wondering why I couldn't do anything - my family called it my "lazy bone" disease.....it was a really tough time, but YOU are tough and WILL SEE IT THROUGH!
After all, you have a brand new, gorgeous little nephew to spoil and enjoy!
Hang in there!
Love,
Erin

Hey Rach,

In my experience, there just doesn't seem to be a strong correlation between the oxygen sats and the level of crudiness I'm feeling. For instance, last week I was going into the low 90's and upper '80's a lot. I looked horrific with the right side of my face falling down and I was definitely noticeably out of breath even just sitting and talking. But, I was able to go over to my friend's house a couple of time just to hang out and talk. The last couple of days I've been feeling awful - curl up into a ball on my bed and feel like dying awful. My eye still droops, I feel like I'm really having to suck in to breathe, but now I also have this shaky feeling inside and my arms are shaking with weakness and my fingers are numbish and slow to move. But guess what? My oxygen sats and even my heart rate look better. I don't know why! The oxysat is still falling but not nearly as much. Are other breathing muscles taking over? Has the disease moved to other areas? I just don't know.

I don't have oxygen but I find that if I'm feeling awful that going on the CPAP works, regardless of what the oxysats say. And no!!!! You're not crazy, it's not all in your imagination. But ya, I totally understand how you feel. It actually makes me feel better to see the oxygen sats go down because I feel like I have some validation that I'm not crazy. This disease is both devastating and sometimes completely random and, at least in my case, that can make me feel crazy. Because it's so hard to predict. I figure I have about 75 symptoms. Like an eskimo with snow I have probably 30 different fatigues that all feel different. I finally figured out my disease is like a kaleidoscope. It"s made up of the same elements but from day to day or even hour to hour it's going to look completely different. THAT made me feel crazy because for a long time I was describing the disease differently at one point in time from, say, the year before. After 8 years I'm finally seeing the big picture and able (kinda) to predict what's going to happen.

Anyway, my point is TRUST YOURSELF. If you're feeling better, you're feeling better. If it's psychological, the effect will go away soon and then you'll know. Otherwise, it's great that you've found something that helps.

Ally

Thanks Erin, Joan marie, Annie and Ally.

I just think Im going mad some days. I haven't let you in on the whole picture as I only worked it out yesterday and Im panicking! It makes sense of why my CRP is high and why my MG is getting worse.

When I was two I had major surgery on my bowel for an intussuception (probably spelt that wrong). I was fine after the op but at the time due to a misdiagnosis (common thread!) I was left with a 50/50 chance of survival as I went on the operating table. Anyway as I say the op went fine and Im here to tell the tale..

For years afterwards I would have spells of awful abdo pain, no one knew what it was until, after 6 months of being told I had IBS (another misdiagnosis!) I collapsed in 1998. I had bowel adhesions and they were pretty bad. Basically the whole of my intestines were stuck to the inside of my scar. It was awful, I was in so much pain after the op I was on a morphine pump, I couldn't sleep lying down and I had to be put on a catheter as my bladder stopped working. I was in hospital for 9 days.

The thing is now, I think I have them again. The pain is exactly like what I had in 1998. Im fine as long as I dont eat or drink (which was exactly the same as 1998). Not a great way to live. Ive always reacted strongly to the mestinon, but I have realised the pain that I have been suffering is exactly what I had before, I just put it down to the drugs. Obviously mestinon stimulates the intestines and that is exascerbating the problem. The pain I have is sharp colicky pains high up between my ridge cage and belly button. Then Im left with a dull ache. To say Im scared is an understatement. It is exactly the same symptoms that I had before in exactly the same place. The pain starts as soon as I put something in my mouth, so basically as soon as the intestine is stimulated. I couldn't work out why that as soon as I put a tablet in my mouth my guts hurt, even when using propantheline. Propantheline if I had IBS would stop the pain.

Im terrified this will mean I will have to have surgery again. The surgery doesn't worry me, its the fact I have no diagnosis for the MG. What if they ignore that completely, they could kill me.

Im also scared if I go to the drs he will tell me its all in my head. Stomach pain and muscle weakness are two symptoms of conversion disorder. Giving them yet another stick to beat me with.

Why me? Sorry to ramble but Im scared.

Love
Rach

Rach,

Please forgive me if what I'm about to say is a big downer. But, I do feel that not having a diagnosis leaves us extremely vulnerable. I remember in college, as a psych major, reading studies where they gave peope solid facts and facts that were probably true. The probabilities were very high or very low. Regardless, people discounted the facts that weren't presented as solid. You can imagine the implications for us. And I see the same thing playing out in my life time again and again: close friends, my pcp, my sleep doc getting on board when I talk about mg, but then the next time I talk to them it's like it doesn't exist and I'm back to square one
.
I will tell you also that the closest I ever came to dying was after sugery for a kidney stone. My oxygen stats went into the 80's and I could not, could not pull them up. I remember thinking that this has got to be the worst feeling in the world. I felt like I would do anything, cut off my own arm, to be able to breathe. Well, it's such a strong instinct, isn't it? The alarms were going off the the nurse just kept telling me to "relax". It was a nightmare. I begged her for oxygen, which I finally got and then I was scared, so scared because they kept telling me to take it off and go home. At the time I had never heard of myasthenia gravis, I just knew that I was very sick. But I guess that's my point: knowing what I know now I'd have made one heck of a stink. I would have insisted that an emergency doctor be brought in, that my anesthesiologist be paged.
Rach, you're in terrible pain, you're suffering, and ths can't go on. You need help, and you've got to push and push and push until you get it. Yes, you're going to tell people about mg and they're not really going to hear it. But you have to keep at it. Make a list of your symptoms, emphasizing breathing problems, that you're on oxygen and attach direcitons for what to do in an emergency and then give that sheet to every who is involved in your medical care. The emergency directions I use I'll bet you already have. They are from the MGA's Manual for the Health Care Provider, pg. 24, titled "2.13 Special Situation, subsection 2.13.1 Myasthenic or Cholinergic Crisis". I keep a copy of this page in my car, ny best friend has a copy, and I have a copy in the kitchen in a bright yellow folder that my kids know to show emergency people. There is also a section on anesthesia management in the same manual.

You need help, and you've got to get it! As wince inducing and humiliating as it is not to be believed and to have to say it over and over again, you need to keep shoving this information into people's faces when you go to get help for your gi problems. Please, please go get this looked into. And stay strong! You can do this!

Ally

Bit the bullet yesterday and spoke to the Dr. He was very nice but obviously theres not a lot he can do over the phone. I have a home visit today lined up for lunchtime.

The pain has settled a little, Im just left with a dull ache rather than the sharp colicky pains. I can cope with the dull ache.

A friend has told me that if it is bowel adhesions they will try and treat conservatively first. Which I didn't realise yesterday, I just went straight back into the horror of 1998. Treatment is usually IV fluids for a day or so to let everything rest and settle. Also the majority of bowel adhesions do resolve themselves. So Im hoping this is the case.

Decided to tell the Dr as I figure if I end up having surgery its better that its planned than it being an emergency. I have the MGFA book and so does my neurologist, so if it comes to that I will shove it under their noses.

Thanks I just went into extreme panic mode yesterday, 1998 was a horrible year (I do seem to collect them! LOL) and I didn't want to repeat it.

Love
Rach

It's easy for us to jump to the worst possible scenario since we:ve actually landed their a few times.
Hang in there!

Ally

Rach, Well, that "bit" of history now makes me wonder about your O2 stats. Could you have stenosis somewhere of an artery? With all that surgery, I have to wonder. And then there's the kidney infections. Maybe there is renal artery stenosis. I think you'd better get yourself to a cardiologist too.

O2 stats do fall late in the game with MG so their being in the 90's can be deceptive. It's better to go by how you are feeling.

I'm sorry you have other stuff going on. I imagine that is very scary. I hope someone over there can figure this all out for you.

Annie