Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I have not posted much in a while, just some simple drive-by-posting. This is a great group and I enjoy being a part of it. You are all a blessing to me. Thanks for your prayers, support, and encouragement.
Things are still gone fairly well for me. I have all the same symptoms, but not a severe. I did have a rough three-day weekend, but hope that it was only a quickly passing issue.
Spring is in full bloom here in North Georgia and the days are hot already. It sure makes me want to cut grass and work in the yard. But the boss will not let me because of my breathing. She is right, of course! I told her, "what she don't know won't hurt her!" She said, "what she don't know will hurt me when she finds out!" She Won!
I have been working on some financial matters for the last few days. It is amazing how fast medical bills can grow. Over the last twenty-four months, my hospital and doctor bills have totaled $361,775.12 (not including medications). That averages out to $15,074 per month. I read that Myasthenia Gravis is one of the most costly neurological diseases to treat and I believe it.
Things are still gone fairly well for me. I have all the same symptoms, but not a severe. I did have a rough three-day weekend, but hope that it was only a quickly passing issue.
Spring is in full bloom here in North Georgia and the days are hot already. It sure makes me want to cut grass and work in the yard. But the boss will not let me because of my breathing. She is right, of course! I told her, "what she don't know won't hurt her!" She said, "what she don't know will hurt me when she finds out!" She Won!
I have been working on some financial matters for the last few days. It is amazing how fast medical bills can grow. Over the last twenty-four months, my hospital and doctor bills have totaled $361,775.12 (not including medications). That averages out to $15,074 per month. I read that Myasthenia Gravis is one of the most costly neurological diseases to treat and I believe it.
Love the boss' reply!
- Ross
It certainly is amazing, Kerry, and I'm glad it's helping you. My bills were equally large, primarily because of all the PLEX and all the hospitalizations. Can you imagine if you didn't have health insurance coverage?
Your wife sounds wonderful!
Glad she is keeping you in check:)
Im glad your symptons are not as severe now nad you FEEL like doing yard work.
I understand the medical bill crisis- just got another one yesterday- but yes, it would be so much worse if I didn't have insurance! Greatful for that for sure.
Jeannie
I have been afraid to add up the costs of the last 2 years but I should do that.
Thanks for the update on your condition. Onward and upward!
I am always gobsmacked by the cost of your medical bills and thank the Lord for Medicare in Australia, where all are treated in the public system free. Private is another matter.
Inquiring minds need to know these things! :-)
The US is about generally placed about 13th on the list of countries with respect to how good the healthcare system is. Dont believe what Fox News tells you. From the position of the whole of the population, as opposed to those with the best level of insurance, the US is pretty much rubbish on the international table. For those with the best level of insurance the US is almost top and is better than the UK's NHS for but not by much and falls below what the French or Scandanavians have.
If you or your employer buy medical insurance in the UK then it is at least as good as the US and costs under a third as much. You people are really ripped off. For some obsure reason people in the US seem to think you cannot have private cover as well as a state system. Very odd as they are not mutually exclusive anywhere in Europe. I have private insurance but do not use it for MG because I would not be able to have my excellent neurologist and his team.
My own experience of the NHS for my MG was that I was correctly diagnosed on the first day I presented myself and the treatment that was started at that time proved very successful. When I got home that evening my general doctor called to see if there was anything I needed and to tell me my first months meds would be waiting at 10am the next morning for collection or, if I needed they could be delivered ( mestinon, prednisolone, calcium/vit D supplement, alendronate and omeprazole). The hosital had let him know that I might need advice. He arranged comprehensive general blood tests each month and eye checks every three months to make sure the steroid was not producing problems. I get blood pressure and general health checks every two months for the same reasons. It was expalined ivig was available if I wanted it but I did not.
During my taper down of the steroid I have had repetitive nerve stimmulation tests done routinely and antibody levels minitored to make sure that it is going okay. As far as I can tell from the posts on this site, in the US it is just done by guesswork. They wait to see what happens and if it is a relapse , too bad.
I am really happy to be treated under our system and find it worrying to think what happens to MGers in the US if they dont have insurance.
Rather than send each other prayers, do something realistic like lobby your congressman to have a more ethical medical system that looks after evrybody.
I hope you realize my comment was totally tongue-in-cheek. I was hoping to get some cogent replies to my comment to show others how really good things could be here. I'm delighted by your response.
Curt
Well if Curt was trying to get anbody's goat, he did. I agree with you completely except that I will take the prayers as well as a change in the system. But you are right. Half the letters I write to my congressman do not get mailed, because the response is so poor. I have been told (for those who do mail your letters) that the second letter in response to your congressman IS more effective. Both my husband and I are doctors, as is our representative, and the only "professional courtesy" we get is to get his partyline report which only serves to raise my blood pressure, so I ignore it, but whenever we write, we get put back on his list. At least our responses to the surveys have become so scathing that we no longer get solicitations for campaign funds! b.
Healthcare? Insurance? Inflation? Etc? It all has its pros and cons in my estimation. A never ending cycle of debt increases(money printing for lack of better words) and price increases(in terms of dollar value) is not the way to go, or in other words neither is inflation by currency devaluation. Not to mention the manditory insurances for everything. How much was healthcare 50 years ago and how much was a car or gas? I cannot believe the stuff that goes on in not just the US, but in the world today. The UK is no picnic either. So everyone is happy to pay the government a lot of tax. The costs for these implemented programs come from somewhere. Nobody is safe from those in power of this place. Give the government(s) more control to say who lives and who dies at some point and then what is left?
Do people actually believe that our governments want all of us living a long time, staying off medications, and beating cancer or otehr life threatening disease?
Slaves we are to the systems that are created FOR BENEFIT OF THEM and BY THEM, not for us.
TJ
With all due respect, I don't understand a word of what you are saying.
Universal health coverage, while not totally isolated from the effects of inflation, is the best defense AGAINST health cost inflation. This is provable and has demonstrated itself very clearly in large and advanced economies, France as a good example. Read carefully what Gwyn posted. Universal coverage is NO different than public education or public highways, except there's a lot more money to be made if it stays private. I have no idea where debt increases play into this discussion. Universal coverage is far cheaper and can be an engine for reduction of debt. Only the unkowing argue to the contrary.