Some heat ffrom landlord

[kathylee]

Blast!
There was a leak in an adjacent apartment so the landlord came in when I was at doc today. His wife just stopped by and asked what all the stuff was by my entrance..alot of boxes some full some not. I said I wasnt gonna unpack anymore cause I need to move to the first floor..told her son this last week and about my hopitalization for myathenia gravis crisis. Did she think I was gonna move?
Then she asked about the two bags of trash that I had ready to go out. She I just gatthered one since last nite. She said shed be glad to take it. I gladly gave it to her and pointed out how hard it is for me to take the stairs now. I've got no comment yet on how they feel about moving me down to first floor.
Coming from german parents and grandparents who were obsessed with cleaning this feels like I've been a bad little girls...last thing I need today since I have come down with another virus just since this morning! Did get my endocrinologist on the phone today and said I need some help getting my vitamin D back up....I can feel inthe various sumtpms I used to have that it is very low again cause I havent tanned nearly enough due illnes and cuting back to 6 0r 7 minutes since I reacted to heat before the MG crisis. She said she will consider now giving me injections if my blood work comes back low....I know that is part or all of why I am sick today.
enough venting
Kathylee

[DonnaW321]

Hi Kathylee,

Sorry you are feeling so badly.  I hope you have some friends around that can help you out physically when you need stuff moved.

What does an MG crisis feel like?  From 2004-06, I was very physically weak, and it had all come on within a week when I had been very strong. Struggled with fatigue and weakness...couldn't hardly blow dry my hair, lift my arms, carry stuff, would stumble, legs felt like lead, etc.

One day I was doing some painting which required rolling a roller over my head. When I got home, every muscle in my body started twitching, I felt like I couldn't breathe  (first time in my life) and I felt like I was going to die. I know that sounds strange, but basically my body was going nuts. I called 911 ( also the first time ever for myself) and they came, took oxygen and said it was fine, and maybe I was having a panic attack. I declined transport, and eventually my muscles stopped twitching and I felt like I  could breathe again.  I know darn right well it wasn't a panic attack...my body was giving out from the painting. I've had a couple of doctors mention MG, but no one seems to go as far as to diagnose it.  From 2006 till this spring I did pretty well, but now I am having a lot of weakness again, pain, and most likely Sjogren's.  I keep having Vitamin D problems no matter how much sun I get, so I am now on the 50,000 IU pills once a week. My new rheumatologist is a big believer in Vitamin D, thank goodness!

Donna

[irish]

Donna, Get yourself to a neurologist as soon as possible so he/she can see your weakness. People who have symptoms like yours most certainly should be checked out for myasthenia. The inability to blow dry your hair is one of the cardinal signs along with a nasal sounding voice, swallowing food up into your nose, weakness in thighs and upper arms and problems breathing. That ambulance crew did not know what they were doing. They were diagnosing and that is not their job. Their job is to transport and let the doctors diagnose.

When I learned that I had Myasthenia I called my local hospital and told the people in ER to be aware that if I came in with breathing issues and was not responding well it was a myasthenia crisis. This way they should be more aware of what meds I need.

The blood work you need done is essentially the acetycholine blood test and the anti-striated muscle antibodies. You can also have MG without having positive blood work. Many people are diagnosed on symptoms alone. Also, the eye lids will droop and make it look like you are half sleeping. It is the loss of muscle control to hold the eye lids up. This can progress slowly during the day and is usually worse at night. Also, double vision can be very common. Let us know how you are doing. Don't let them tell you it is all in your head. MG can be very serious but it is very treatable. Irish

[kathylee]

Irish  you beat me to it......thanks I wasnt up to responding but I agree......Donna you have the same symtoms I have..Yes the hair drying thing is obvious..do you have trouble singing? That was one of my biggest and saddest symptoms that I now know is also a myasthenia hallmark but I had been to 3 pulmonologists and told them this and gone thru much pulmonary testing and told some of the techs and they didnt get it either. The techs always said I couldnt have a lung problem because I breath better when it is rainy out.....but of course that part is all or part due to sjs dry lung. I SO miss singing...my voice just disappears!
You do need to do what ever it takes and how ever far you need to go to get a neuro that will test you and educate yourself on how to care for yourself around this MG. I started before I was diagnosed. I recently had to go to the ER locally for a breathing event brought on when xanax depressed my already weak lung area muscles. Even tho I told them it was a disaster. The arguementative nurse said when I told her I was having trouble talking "well you talking now." I had a number of coloful words for her when I got home. Actually she made me cry when she tried to bully into a second try on a painful blood gas. In mid cry I said "I am already miserable..I cant add more miserable on top...they never did a blood gas when I was in hospital for MG....not gonna do it now."
Call the Myasthenia Gravis Foundation 800-541-5454. They are nice and they can send alot of info. I live in the mid west and also called the Kansas City MG group and wow they were SUPER! They sent me tons of info 816-256-4100. They have a brochure I will now carry and GIVE to them at ER tho I'll never go back to the one I mentioned. I talkes about a Myasthenia crisis and what should be considered. They exhausted me at th ER. I nearly left 3 times just so it would stop and I could get the rest I needed.
Something I did not know is that heat can trigger MG syptoms.....A hot shower put me in the hospital with MG crisis. Thank heaven I was at the doctors office that morning as I was getting worse and did not have to go thru 911 folks like you.
Ive been see by nearly 25 doctors over the last 11 years trying to get diagnosed and now they say I have had since an incident 20 years ago! Isnt that rediculous....
Be prepared that they will want to blame your symptoms on Panic attacks anxiety, depression and so on.  my breathing problems have consistently been pegged that way. In 2005 I went to ER with breathing problem I now know was MG related yet they checked my heart....asked why I didnt have a rescue inhaler and sent me home. At least they didnt exhaust me so badly and it was so cool and clean in there that I did get some relief.
I had to go the local university hospital 45 minutes away to start to get any of my stuff diagnosed including my sjs. AND get a doctor who understand that just cause you were traumatized as a child doesnt mean every physical issue the rest of your life is in your head. THANK HEAVEN!!!
This was in 2005 fall that I got this women doc. Tho I will say she has four square resisted that I have genuine weakness not fatigue. SO eveytime I go and she and her staff say "is it your fatigue" I say calmy "no, its WEAKNESS".

Enough here..sorry for the short story...Let us know how you are doing and take good care.
Lots of love
Kathylee

[kathylee]

FYI,
I will be lucky enough to get a homemaking aide in the next couple weeks. This is free thru the county in Iowa if there is medical cause and low income situation. Ive had it before. It was hard to accept this help at first........... heck it is still hard to ask some one else to clean my dirt.

Kathylee

[DonnaW321]

Hi KathyLee and Irish,

Thanks so much for the replies!  I was just gone to the Outer Banks of NC for a couple of days...I was hesitant to go because of how I felt but managed to get thru it. 

I was given albuterol by the doc, but it doesn't seem to help. In fact, I feel like my heart races when I take it.  Basically, what is still happening is that I'm not too bad when I get out of bed, but as the day progresses  (somewhere around 4 pm) I start feeling like I am suffocating...I cough a lot and there's a heavy feeling in my chest.  I"ve woken up in the middle of the night the last few nights feeling the same way, and this morning is one of the first mornings this has been going on in the morning. I feel awful, like I can't get enough air.  I am still taking the prednisone because the rhuematologist wants me on it till he gets back from vacation next week.

The only time I've felt any better is when I was at the ER and got a breathing treatment. I think the primary care doc's peak flow meter is messed up because I can blow a 500 on it  (it looks ancient) and can only do a 300-400 at any given time on the brand new one the ER gave me.  So they don't think there is anything wrong.  Next time I am taking mine with me to show them as there was no resistance on their meter at all when I blew into it.

This whole breathing thing has been going on for a about a week and a half now.  The time I mentioned the ambulance happened a few years ago. My muscle weakness as far as my arms and legs go isn't quite as bad as a few years ago, but still having some.  But a few months ago it was very bad.

I don't know what to do...go back to the primary care doc today or what.  It'll take awhile to get in with the neuro I am sure...and every neuro I've ever been to has been useless.  "Walk on your tiptoes, who is the president, cross your knees, I can find nothing wrong."  Agh!

Donna

[kathylee]

Donna
What I was told was to check out the neuro ahead of time. If you get basic treatment info off MG foundation websites you can call and get a nurse NOT reception and ask them treatment questions. If they dont get this right dont go find  another. I found a doctor rating website ratemd or md ratings.....you mind a good neuro there. Albuterol never worked for me either. In 2003 I had a lung infection that I had to fight to get treated cause I didnt rattle and some of the things they look for but I sure couldnt breath. I just happened to be in process of being reffered to a blood specailist who alos treats Chronic Fatigue..that was my label at the time. He did massive blood tests and found I had markers for CMV cytomegalovirus in me. This was terrifying cause the only people who are supposed to get this are people with aids or transplant patients. I got an Aids test for record and did not have it. I was treated with Valcyte for this and am unclear what it did for me since the drug took a HUGE toll on me. The Drug zithromax in all honesty help me more than anything tho I had to take multiple courses.
Another issue...is it you that said you have vitamin D issues? This in itself complicated my case. When my Vitamin D deficiency was treated I thought I was getting cured because my strength did remarkabley increase. It causes proximal muscle weakness like MG tho it would be all day. And my university is currently soing a study about the relationship of vit D deficiency and lung infections. Alot of what you say is so familiar to my history.
Kathylee

[DonnaW321]

Hi Kathylee,

Yes, it is all very interesting because not only have I had continuing vitamin D deficiency issues, but I also had a bout with CMV back in 2001.  It caused incredible fatigue....doc did the same thing to me, made me get an HIV test because who knows where my ex husband had been.  (That's why he's my ex!)  Fortunately, it was negative.  I was never offered any medications for the CMV...after about 6 months the incredible fatigue got better.   

My breathing was so bad AGAIN today that I went to primary care doc again. I sat in her office and coughed and coughed and coughed and could hardly talk. She said she didn't hear wheezing, and my oxygen levels were normal.  She increased the prednisone, and put me on something called Foradil for my breathing. It's a little capsule that gets crushed and you inhale the powder. It did seem to help things maybe 50% today.  I've been very short of breath and miserable all day...today is my last day of my mini-vacation and back to work tomorrow.

I don't see the rheumatologist till next week as he's on vacation. It will be interesting to see what he says about all this. Interestingly enough, my eyes aren't as sensitive to sunlight and some of the nerve pain has let up since I started the prednisone.

I can take pain, I can even take weakness and fatigue (which I hate more than pain!) but this breathing thing has been very hard. It's the first time in my life I have ever experienced anything like this.

Donna

[kathylee]

donna,
Best Vitamin D website www.vitamindcouncil.org. They will email you their newslletter too. WOW! CMV too huh. Yes well for me it was a guy I thought I was really in love with......even AFTER he gave me herpes and denied it. After him I put on 50 pounds to be sure no one would date me cause I was so scared of my poor judgment around men. Didnt date for 7 years! I can do ALOT of things well but men have not been one.

Kathylee

[DonnaW321]

HI Kathylee,

Yes, I've read a lot on Vitamin D including the Vitamin D council.

I remarried a wonderful guy over a year ago....he's hard working, honest, and loyal. What more could I ask for?  It took me a long time to trust myself or trust a man either.

When I was single I used to joke that I wanted to marry a widower because I wanted a man whose wife didn't leave him on purpose!  It turns out that I met a widower!  He's awesome to me...hates that I have been feeling ill but is kind about it.  He gets nervous about me being sick because his wife died of breast cancer.  But I keep assuring him this is the nagging kind of sickness that won't kill me, just make me tired and in pain (and now short of breath) and hopefully medications will help control it.

Donna

[kathylee]

I am jealous...What a great guy...does have a brother?  I guess I should be more hopefull around finding someone again. I am only 57. I did date one guy about a 2 years ago. He seemed caring at first but the day he compared what I had to tell him to a soap opera it was the last straw. I have a very nice looking man, a teacher who is paying attention to me and honestly I am so making it hard for him cause I dont know if I trust, or just have energy for this.
Kathylee