I was on a patient chat room the other day and a fellow patient mentioned a friend who had had a operation called the "liberation procedure". The patient in question had multiple sclerosis (MS), and as CIDP and MS are quite similar (both demylenating and auto immune) my interest had been peaked so I did some more research.
Unfortunately, I have to admit that I don't think that the liberation procedure would be suitable for CIDP patients as it is supposed to relieve pressure on the brain stem by widening the veins in the neck. The demylenation in CIDP patients is in the peripheral nerves.
But I was astounded by some of the things I read. But before I tell you what let me give you a little background. The liberation procedure is basically angioplasty in the veins in the neck. It is a common procedure to treat other vascular problems. It is considered relatively safe.
Yet, in many western hospitals the procedure is being disallowed. Why? you may ask. Because the evidence points to the procedure not working? Or maybe there are not enough doctors trained in the procedure? How about the hospitals are ill-equipped to perform such an operation?
All reasonable answers, but all wrong. The real reason is because of the lawyers protecting hospitals and doctors from litigation. And what do lawyers know about medicine? Nothing. What do they know about treating sick people? Nothing. And what do they know about being sick? Nothing. And no. That common cold you thought was the mother of all cases of swine flu doesn't count.
MS is a debilitating, degenerative and eventually fatal disease. Let me try and paint a picture for you. You live in a wheel chair, you cannot feed or bathe yourself. You can't even wipe your own bum, and you are only going to get worse until you die.
But there is hope. You hear of a procedure that has the potential to halt the progress of your disease, maybe even reverse it. You even find a qualified doctor prepared to do the procedure for you. But wait. There is a problem. Because a lawyer is scared of the hospital being sued he puts a stop to the operation. You, as the patient are now condemned to a life of disability, and your one hope of wrestling back some form of independence and quality of life has been squashed by a lawyer.
If lawyers are scared of being sued for malfeasance, maybe as patients we should sue them for nonfeasance. If failure to act when you have the means and capability to do so leads to someone having a substantial decrease in their quality of life, surely they should have a right to seek reparations?
As a patient I think I should have the right to decide my own destiny and choose my own treatment options. I take the risks and if something goes wrong, I pay the price. I am of sound mind, and I can make my own decisions. I don't need someone to do it for me. Especially someone with no idea. Lawyers, back off! Until next time, stay well:)
Showing posts with label peripheral neuropathy. Show all posts
Showing posts with label peripheral neuropathy. Show all posts
Friday, December 2, 2011
Monday, November 28, 2011
Good News!
Hear ye! Hear ye. Come one come all, gather round, I have some good news to share! After getting the medical ring around from the medical fraternity I have finally got all the information required to send something of substance to Chicago for evaluation.
I went and saw my GP and he gave me the last two letters of correspondence from my neurologist, my last two nerve conduction studies and the full summary of my medical history. It was a huge relief as knowing the medical system here if I had followed procedure I would not have been in a comfortable position to send everything across to Chicago until May.
I can feel you asking, "Shouldn't you just have done that in the first place?" Well, call me old fashioned, but I would have preferred to do this with a referral from my neurologist, that way upon return, the management of my care would have been much more seamless. However, I have to do what I believe is best for me. And that means doing what it takes to be evaluated for the trial in Chicago.
Just for the record, if she didn't believe my CIDP was bad enough for the trial, why did she write"there is still evidence of a severe demyelinating polyneuropathy"? Food for thought anyway. Until next time, stay well:)
I went and saw my GP and he gave me the last two letters of correspondence from my neurologist, my last two nerve conduction studies and the full summary of my medical history. It was a huge relief as knowing the medical system here if I had followed procedure I would not have been in a comfortable position to send everything across to Chicago until May.
I can feel you asking, "Shouldn't you just have done that in the first place?" Well, call me old fashioned, but I would have preferred to do this with a referral from my neurologist, that way upon return, the management of my care would have been much more seamless. However, I have to do what I believe is best for me. And that means doing what it takes to be evaluated for the trial in Chicago.
Just for the record, if she didn't believe my CIDP was bad enough for the trial, why did she write"there is still evidence of a severe demyelinating polyneuropathy"? Food for thought anyway. Until next time, stay well:)
Tuesday, November 1, 2011
Cure for HIV?
Whilst searching the net for information on stem cell transplantation I came across this article.
Stem cells and HIV
Yes, by all accounts this man has been cured of HIV! However, there is a down side. Only 1 - 3% of all people of European descent carry the CCR5 delta 32 mutation. Those people then need to consent to donation and be healthy enough to donate. Do the math, there are far more people with HIV. There is also the compatibility issue.
The second point to note is that to put a patient through a very risky and life threatening procedure is unethical, seeing as the quality of life and longevity are almost normal with the anti-viral out on the market now. As the experts say, "HIV no longer has to be a death sentence".
Still, a cure would be nice. In this case the patient was treated for leukemia, they just managed to find a transplant donor with the delta 32 mutation, and this gives us a valuable research tool. We already have drugs that attack individual proteins on the surface of cells. For example, a drug I am researching for my CIDP, rituximab attacks the protein CD20, hopefully destroying the cells that cause my neuropathy.
So it is probably only a matter of time before they develop a drug to attack CCR5. Seeing as this article is 2 years old, and the Berlin Patient was treated 4 years ago, that cure may be closer than you think. Stay Well:)
Stem cells and HIV
Yes, by all accounts this man has been cured of HIV! However, there is a down side. Only 1 - 3% of all people of European descent carry the CCR5 delta 32 mutation. Those people then need to consent to donation and be healthy enough to donate. Do the math, there are far more people with HIV. There is also the compatibility issue.
The second point to note is that to put a patient through a very risky and life threatening procedure is unethical, seeing as the quality of life and longevity are almost normal with the anti-viral out on the market now. As the experts say, "HIV no longer has to be a death sentence".
Still, a cure would be nice. In this case the patient was treated for leukemia, they just managed to find a transplant donor with the delta 32 mutation, and this gives us a valuable research tool. We already have drugs that attack individual proteins on the surface of cells. For example, a drug I am researching for my CIDP, rituximab attacks the protein CD20, hopefully destroying the cells that cause my neuropathy.
So it is probably only a matter of time before they develop a drug to attack CCR5. Seeing as this article is 2 years old, and the Berlin Patient was treated 4 years ago, that cure may be closer than you think. Stay Well:)
Thursday, October 27, 2011
Another mistake... Or was it?
When I wrote the post "We learn from our mistakes", there was no doubt in my mind that the doctor was at fault and I should have confronted him about it. However, this story beats a different drum.
The first medical problem I ever had was my kidney disorder, cystinuria, which was diagnosed in 1994. Unfortunately, as you would know if you were ever a sufferer, the treatments are not perfect and often carry some nasty side effects. So one really has to weigh up the cost versus reward.
One such treatment for cystinuria is a drug called penicillamine. Now penicillamine has a list of side effects as long as your arm, but is considered the best drug for treating cystinuria. I know now that a side effect of this drug is peripheral neuropathy (CIDP), but back then it was not communicated to me neither was it listed in the long list of side effects that came with each box of drugs.
So I took the drug and lo and behold I now have CIDP. A mistake I have paid for the last ten years. But was it a mistake?
Firstly, the number of cases linking penicillamine to CIDP were very few, and a search by my doctors post my diagnosis did not reveal one case of a cystinuria patient on penicillamine contracting CIDP. And if the pharmaceutical company that manufactured the drug did not list CIDP as a side effect, how was my doctor ever going to know about it?
This point helped me rationalise in my mind that my doctor, and even the pharmaceutical company were not negligent in my contracting CIDP. The irony is at the time I talked to a lawyer (informally) and his reply was "You have a case". I don't think I could live with my self if I decided to sue in this case, as I really feel based on what we knew at the time, no party involved was negligent.
Secondly, if CIDP had been listed as a side effect would it have changed anything? Honestly, no. At the time I took the drug I had no idea what CIDP was. It would have just been another name on the list of side effects, and it would not have altered my decision.
So was it a mistake? I say no, it was more like a horrible accident, and the blame in my opinion, falls with no one. After all, if a meteorite falls on your head do you get to sue NASA for failing to detect and warn you about it?
Sadly, these days it is too easy to apportion blame, and realistically an individuals shallow victory only adds to the detriment of society. After all, next time you whinge about your doctors bill is, ask him how much his malpractice insurance is. In my case, I could have sued, I could have won, but I'm glad I didn't. Until next time, stay well:)
The first medical problem I ever had was my kidney disorder, cystinuria, which was diagnosed in 1994. Unfortunately, as you would know if you were ever a sufferer, the treatments are not perfect and often carry some nasty side effects. So one really has to weigh up the cost versus reward.
One such treatment for cystinuria is a drug called penicillamine. Now penicillamine has a list of side effects as long as your arm, but is considered the best drug for treating cystinuria. I know now that a side effect of this drug is peripheral neuropathy (CIDP), but back then it was not communicated to me neither was it listed in the long list of side effects that came with each box of drugs.
So I took the drug and lo and behold I now have CIDP. A mistake I have paid for the last ten years. But was it a mistake?
Firstly, the number of cases linking penicillamine to CIDP were very few, and a search by my doctors post my diagnosis did not reveal one case of a cystinuria patient on penicillamine contracting CIDP. And if the pharmaceutical company that manufactured the drug did not list CIDP as a side effect, how was my doctor ever going to know about it?
This point helped me rationalise in my mind that my doctor, and even the pharmaceutical company were not negligent in my contracting CIDP. The irony is at the time I talked to a lawyer (informally) and his reply was "You have a case". I don't think I could live with my self if I decided to sue in this case, as I really feel based on what we knew at the time, no party involved was negligent.
Secondly, if CIDP had been listed as a side effect would it have changed anything? Honestly, no. At the time I took the drug I had no idea what CIDP was. It would have just been another name on the list of side effects, and it would not have altered my decision.
So was it a mistake? I say no, it was more like a horrible accident, and the blame in my opinion, falls with no one. After all, if a meteorite falls on your head do you get to sue NASA for failing to detect and warn you about it?
Sadly, these days it is too easy to apportion blame, and realistically an individuals shallow victory only adds to the detriment of society. After all, next time you whinge about your doctors bill is, ask him how much his malpractice insurance is. In my case, I could have sued, I could have won, but I'm glad I didn't. Until next time, stay well:)
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