So . . . .things have just basically gone to hell in the last week especially. The insurance company declined paying for the Rituxan, and has now declined an expedited appeal, so I have to wait another month to see what they will do about that, but it doesn't look good. I have been VERY lucky because the staff and my physician at pharesis have really been fighting for me to get this treatment and have gone way above and beyond the call of duty. They have even managed to get my neuro to write some things to the insurance company, after some kicking and screaming. The insurance company also told my neurologist that they may dispute my diagnosis, I assume because I'm sero-negative and my EMG was normal, so the neuro is talking about doing the electro-physical tests again and God knows what other tests to try to provide more evidence for my dx. I'll see him next week to find out what all I'll have to do. I assume it will be the nightmare of two years ago when I was spending every week for literally months at the doctor having all of these miserable tests done to get an initial diagnosis. I'm terrified that while all of this is going on that the insurance company will refuse to pay for any treatments and with my breathing problems I could easily end up in the ICU or even dead, since I live alone except on Saturday nights when my roommate is here, and would have no one but myself to take action if I started to go into respiratory arrest. And even if they pay I'm afraid I'm going to have to start doing the plasma pharesis twice a week because I'm getting weaker. But when I do it twice a week I'm so tired from it I have a hard time working, and I also become anemic.

Meanwhile, I went to the pulmonologist yesterday and she confirmed for me that my muscle strength in my diaphragm and intercostal muscles is indeed steadily declining, just as I suspected. My MIPS was OK, but my MEPS was only 43% of normal--compared to a year ago when it was about 60% of normal. And my asthma is also starting to get a bit worse, although fortunately not too bad. She upped the dose on my inhaler and told me to use my rescue inhaler more often. The problem with the inhalers, especially the albuterol based ones, is that they make me sometimes feel anxious and/or like I'm coming out my skin and that makes it very hard for me to sit still and concentrate when I'm working. She wants to get me a BiPap in the hopes that it will give my muscles a break at night and that I'll sleep better and feel more rested, and perhaps have fewer breathing problems during the day if the muscles don't have to work so hard at night. And I assume that perhaps she's also hoping it may slow the decline of my strength. Because right now I don't sleep well at all and I am tired EVERY single minute of every single day. I've always had bad insomnia, but the pulmo thinks that even when I'm sleeping I'm not getting good rest because my body is having to work to breathe. But since I don't actually have apnea the insurance will probably decline to pay for that as well. If they'll pay I'm willing to try it, but it just feels like one more time and energy consuming thing I'll have to deal with. If I get it I may have to spend a night in the hospital, and I'll have to attend multiple appointments to fit it, learn to use it and have follow up on how it's working. I'll be waiting to hear back from her office about whether I'm going to get the machine or not and I'll see her again in six weeks.

In the meantime, I'm trying to keep working my same schedule, do all the housework and other chores and errands, and now fit in somewhere the multiple doctor's and testing and treatment appointments. I feel like my job could be in jeapardy because I'm having to miss work for these appointments. And I'm just SO tired and the weakness is getting worse and I'm really afraid I'm just not going to be able to keep going like this. I'm afraid I'm not going to be able to keep all of these balls in the air and if I can't my world is going to come crashing down around me. I feel like a mouse in a wheel--I run and run trying to deal with this disease and keep working and try to have some kind of life besides, I use up all of my energy, and I end up right where I started. I'm sorry to whine--I know many of you are worse off than I am, but I feel so very discouraged, frightened, and alone right now. I guess I just needed to tell some people who have some understanding of what I'm going through, since no one I know gets it at all. I'm just so very exhausted, and I just don't know if I can keep doing this. . . .

Thanks for listening.
MK

I'm so sorry that you are having such a tough time at the moment. Its seems we all have to jump through hoops to get a diagnosis.

I saw a professor at Oxford who understands that you can hae seronegative MG and a normal EMG. If you would like more info private message me. He is considered to be a world leading expert (even so he still has serious limitations) but he has developed alongside Angela Vincent a new more sensitive blood test which picks up antibodies that a standard test does not. It maybe a possibility worth exploring.

I hope this helps

Love
Rach

but I feel so very discouraged, frightened, and alone right now. I guess I just needed to tell some people who have some understanding of what I'm going through, since no one I know gets it at all. I'm just so very exhausted, and I just don't know if I can keep doing this. . . .

I unfortunately know this feeling too well. ...

sometimes it would help telling myself that he who has been able to climb out of a dungeon is equiped to be a mountain climber. but, sometimes even that wouldn't be of much help, because how many more mountains should I climb...

you become so vulnerable...

you just want something to work, without having to invent the wheel.

I believe that we all have those times, it's inevitable when you have to live with such a " crazy" illness, and still lead something that resembles a reasonably productive life. and people around you live in the normal world, where distances remain the same, and so does the weight of what you try to hold. and not in the world of alice, where you never know what it's going to be, and can sometimes nearly drown in the pool of tears...

I can say from my own experience, that a bipap, once it is properly adjusted and you get used to it and learn how and when to use it, can significantly improve your quality of life.

alice

MK, I'm sorry about the treatment being delayed. I hate to say it but I can see their point - they are probably afraid of being sued if you don't have definitive proof of MG. It's a heavy duty drug.

About the breathing tests, MIP and MEP can vary from day to day. It's really hard to say for certain if your readings were due to doing too much in one day or an overall downward trend. If your breathing is steadily getting worse (via symptoms) over time, then that might reflect an overall worsening. But with MG, it's hard to tell for sure because of the variability of it.

MaxAir, which is not as "strong" as Albuterol, does not get me as shaky. I can't do Albuterol.

What did they do to confirm MG? Did they miss something? Did they do the MuSK test? Could something else be going on? I'm not doubting you at all, I'm just wondering what you could do to "prove" this to the insurance company, etc. Has anyone done any other testing to see if something is making things worse like a thyroid condition, B12 deficiency, etc.?

Does your company have short or long-term disability? Look into that.

I have to be honest, working with MG can be really hard for some people. With MG, the more you do the weaker you can get. So then the more treatments you need. It can be a tough trade-off and decision. I tried over and over again to work but to no good end.

Do you have a tape recorder? Can you record a message for the 911 operator just in case you can't talk or breathe? Maybe you could press a button and let the machine talk for you if you are alone and get into trouble.

I hope you can work things out. It may be worth a fresh set of eyes on your situation. Have you tried getting a consult at Mount Sinai?

Be careful and let your docs know if you get worse!!!

Annie

MK,
Really sorry to hear about the difficulties you're having with insurance - not to mention how crummy it is to be tired and short of breath all the time.

I applaud you're trying to keep every aspect of your life 'going' - but would suggest that a clean house isn't worth a crisis. Pls cut back wherever you can for now - even tho I know it feels like giving in.

I like Annie's suggestion about the 911 recording. I'd like to think if you had it ready...then that would mean you'd never need it!! But I'm supertitious like that -being prepared is like my talisman against trouble!

Pls be as careful as possible MK - - and I do hope things get better for you soon.

Sue

Ok, MK!!! I am just crying over this!! I know that we've got members being treated horribly overseas -- yeah, even some here in the US -- but, you seemed to have a firm diagnosis and good insurance. Talk about having your feet knocked out from underneath you!!

MG is ENOUGH to have to deal with -- without all of the OTHER crap -- doctors who don't know or care -- insurance companies who are trying to keep from spending a dime............................

And you are basically alone in your home when you are not at work. NOT good.

Yes, Annie's suggestion is a good one.

I just don't know what to say.....or do......just "listening" doesn't FEEL like I'm "doing" enough!!!!

MK
I'm so sorry that you are having such a bad time with your Insurance Company. I hope and pray that things will go in your favor in the near future.

I know it is very hard not to give up but please hang in there.

You are in my thoughts prayers.

Shari

IM sending nothing but good vibes from the east coast to you.
I hope you feel better soon and get a bit more cooperation from the insurance companies.

MK,

I'm so sorry for what you're going through. It shouldn't be up to Insurance companies to diagnose people. That's why they're in insurance, not medicine. If a neurologist has diagnosed you with MG, and they'e qualified to make such a diagnosis, the best treatment recommended for you by your diagnosing doctor should be given and covered by the insurance.

You've got a lot on your plate, and I hope that your docs. fight to get you the treatment that you need. It's bad enough that you have to deal with these debilitating symptoms, but then having to deal with this nonsense is just not fair. It seems like people are just supposed to pay into insurance to line pockets, when it's obviously our intention to protect our health in case anything ever happens, otherwise we're just paying for nothing!

I hope that it gets worked out, and you get the treatment that you need!


Nicky

Wow. This really freakin' stinks!!!!!! Without the emg and the antibodies you must feel like a sitting duck right now. Why does it have to be so hard for some of us to get treatment? I totally feel what you're saying about being so exhausted from the disease anyway, and then to have to find the strength to fight for treatment is overwhelming. Aaaarrghhh. It's even worse for those of us without much family support. How many times can you pick yourself up?!?

I totally understand worrying that you're going to end up dead or in the icu before you get the help you need. It's terrifying. And frustrating.

I know we've discussed this before, but my MEP is always much lower than my MIP too. When I was in the hospital it stayed low the whole time. I can't understand why MEPs are dismissed. Do you have any insight into that? Have you ever had lung volumes done? My ERV (expiratory reserve volume) is always really low too. On the last three tests 38%, 33%, and 53%. My understanding is that that is a measurement of when you breathe out and then they tell you to keep breathing out as hard as you can - it's what we can breathe out, but don't with a normal breath. I mention it because I wonder if yours might be the same. On the first test the respiratory tech told me that it was indicative of neuromuscular weakness (and our expiratory muscles obviously seem very weak) but it didn't come up at all in the report by the pulmonololgist. I just received the 2nd and 3rd reports (done in California) and the pulmonologist report reads: reduced ERV due to obese body habitus (I'm not obese), neuromuscular weakness, thoracic cage abnormality (not a problem) or pleural disease (again, no). The amazing thing is that the neurologist has been telling me the whole time that the pulmonary tests don't show neuromuscular weakness. What the heck?!? Anyway, I did want to run that by you because we both have these mysteriously low MEP. I'm going to drop off the reports to the local pulmonologist here and I'll let you know what he says. You sound like you have a great pulmonologist, btw.

You mentioned that your pulmonologist confirmed that your diaphragm strength is declining. Was that reflected in any test other than the MEP? If I remember correctly, your spirometry - like mine - is normal. Am I right?

I wonder if you could have your pulmonologist right a scary letter to your insurance company outlining the bad direction this could be heading. Maybe they need to be educated on the danger they're placing you in.

If you can get hold of a bipap, my advice is to get it ASAP. My bipap has saved me many, many times. I don't know what I'd do without out. You'll hear a lot of complaints that it's hard to get used to but I'll tell you what: it's not hard to get used to when you feel like you're suffocated and that thing is helping you breathe. It's actually about the best feeling in the world. When was the last time you were checked for apnea? It seems hard to believe that you can't breathe at night and they can't detect that. That's really frustrating. I know it's one night away from home, but maybe you can get them to re-test you since you're breathing muscles are even weaker. During rem the ONLY muscle not paralyzed is the diaphragm which is working all by it's poor, weak self so theoretically they should be able to pick up some problems. Anyway, I can't recommend the bipap strongly enough. There have been uncountable times when I crawled up to my room, exhausted with horrible air hunger and slapped that mask on and was able to come out of it even as short as an hour later.

On a lighter note, my son just told me that when he grows up he's going to get me a house in the woods where I can relax and be happy - complete with a neurologist bobo doll. Okay, that really made me laugh. No offense to anyone in the medical field!!!

One more thing - there is no way I could work even close to a 40 hour week. Too bad because I'm going broke FAST. But it's absolutely exhausting and crushing to read about what you have to handle. I agree with the other posts that you should look into at least short term disability through your work. What you are having to accomplish just trying to keep your head above the water is inhumane.

Try to hang in there - we're all pulling for you!

Ally