MarkEns
Your Replies
-
July 22, 2012 at 1:25 am
JGL,
Ignore my previous question, I have my answer.
The real question is what do they mean by worse? I can think of four possibilities:
the demyelination is worse, but there is no axonal damage;
the demyelination is worse and now there is axonal damage;
the demyelination is equally severe and now there is axonal damage; and
the demyelination is improved and there is now axonal damage.
We can rule out the first one, because your results suggest axonal damage. Given your improved symptoms, it seems like you could rule out the second and third. That leaves the fourth or a bad correlation between symptom and test. While not good news, it will show the neurologist that she should be more aggressive in her treatment. If the IVIg is not burdensome, then it makes sense to try more IVIg more often and see how you respond. If you respond well, then the typical protocol would not add immunosuppressants or corticosteroids just yet.If you do need them, you have to weigh the risks, which is something you need to talk about with your doctors (all of them), your family, and your supporters. Prednisone has several bad side effects, especially if taken over the long term (see http://noairtogo.tripod.com/prednisone.htm) . The side effects are not specific to prednisone, but are present with all of the corticosteroids, varying only in degree. Some of the immunosuppressants are known carcinogend, meaning that they can cause cancer in humans, which is not to say that they will cause cancer in every human. In my case, I decided that function now was better than long life, so I took the risks and did both. I ended up with cataracts and became pre-diabetic from the steroids. I have no regrets, though.
~MarkEns
July 22, 2012 at 12:47 amJGL,
NCV instruments measure very small signals and so are susceptible to environmental noise. To do an NCV study well, the room where it is done needs to have electromagnetic shielding, to block the environmental noise. My guess is that your doctor’s office is not shielded. Even if it were, there are still several reasons why an NCV instrument might give bad data: faulty leads, a failed capacitor, a noisy power supply, and many others. As somebody who uses scientific instruments, I can tell you that they fail. It is good that your doctor recognized a possible problem and rescheduled you with a different lab.
Sometimes the correlation of clinical response and NCV results is not very good. Many people have GBS and CIDP with severe symptoms and nearly normal NCV. And sometimes, it is the other way around. As Goodney points out, the test is subject to interpretation and technique. The point is that the test is not the end-all, be-all in diagnosis, just one part of it
So let’s pretend that your nerves are in fact worse. You feel better than you have, in spite of that. Your doctor wants a more aggressive treatment schedule. Most likely, that would mean more IVIg more often. You said that in the last week between treatment, you start to decline. So if you have a more aggressive treatment, you might avoid the decline entirely. Sounds like a win to me, unless the treatment itself is burdensome.
How did the test go Friday?
MarkEnsJuly 8, 2012 at 3:36 amA typical implanted port is meant for infusions, not for plasmapheresis or dialysis. The reason relates to blood flow rates. A very fast infusion is done at about 8 ml/min. Plasmapheresis flow rates are more like 80 ml/min and dialysis flows more like 400 ml/min. High flow through a narrow needle leads to destruction of red blood cells, so there is a minimum size for a plasmapheresis needle. The Vortex port mentioned above is supposed to be accessed with a 19 to 22 gauge needle. A normal plasmaphersis needle is at least 18 gauge and often larger. So I think this port is meant for an infusion. That said, I could find nothing in the literature that specifically limits the flow rate, only that the internal pressure cannot exceed 40 psig. The calculation to convert the pressure to a flow rate is not straightforward, so I cannot say the Vortex port won’t work. Presumably these ports have worked for other dialysis and plasmapheresis patients, otherwise the nurse would have have suggested it. Still, if you get your plasmapheresis in an infusion clinic, I would check with a doctor with lots of experience with plasmapheresis.
Godspeed in finding a good solution
MarkEnsMay 30, 2012 at 3:42 amHello Heathermansfield,
At this time, it does not make too much difference if you have GBS or CIDP. If your neurologist diagnosed you with GBS, she presumably will not give you corticosteroids. In that case, the treatment is the same for the two syndromes, either IVIg or plasmapheresis. You are being treated, right?
Godspeed in a prompt recovery,
MarkEnsMay 25, 2012 at 5:22 amThe temptation to eat is bad with prednisone. One way that I managed to not gain much weight was I removed _all_ tempting foods from the house and at work. I carried no cash or coins, so I could not buy anything from a vending machine. I also made sure that I ate a lot of vegetables. It was not fun, but it was not too bad.
May 25, 2012 at 5:10 amI tried it for about half a year. It did not do much for me, but it does work well for others. I did not suffer any short-term ill effects from it.
May 20, 2012 at 9:50 pmHere is a little background on prednisone and Solumedrol. Prednisone by itself is useless. However, the liver converts it to prednisolone, which is the active form. Solumedrol is just an infused form of methylprednisolone. Chemically, there only a small difference between the two, as you might guess from the similarity of the names. Pharmacologically, prednisolone is about 80% as effective as methylprednislone (that is why I took 650 mg: it the the closest practical equivalent to 500 mg of methylprednisolone).
Dick, I cannot remember if you have had Solumedrol infusions. If you did and did not suffer too many side effects, then a 650 mg dose of prednisone should not present too many problems. I am not encouraging you to try this protocol (and nobody should until they have consulted with their neurologist, primary care physician, and all other specialists they see), just letting you know there are other options. Another one you might consider is a double dose every other day. Doing so helps keep the adrenal glands from shutting down glucocorticoid production entirely. It might be slightly less tolerable one day, but you should have a better day on the second.
Again, Godspeed with this,
~MarkEnsMay 20, 2012 at 4:05 amHello,
The dysfunction is something you should discuss with a neurologist and with a urologist. Without a thorough medical history and exam, it would be difficult to recommend any particular course of action. There is the possibility of nerve damage, for which exercises might be of little benefit. Your physicians are likely to ask if your dysfunction coincident with GBS or did it occur later, even if only by a month or two? They are then likely to ask, if it was coincident, did it improve in line with your overall recovery and has it gotten worse lately?
Godspeed in finding a resolution.
~MarkEnsMay 20, 2012 at 3:51 amHello Dick,
When I was on steroids for the second time, I found that taking a huge dose one a week pushed most of the sleeplessness and irritability problems to the day I took the dose. I also took it Friday evening, a couple of hours before bed. It did not keep me from sleeping that night, but I was pretty wired on Saturday. I did my best to stay away from everybody on Saturday because I was not really pleasant (understatement) to be around. However, by Sunday morning, I was much more like my normal self.
The dose was monumental, 650 mg. Yep, more than half a gram at a shot. I did this for four weeks, and then cut the dose by 100 mg a month until I reached zero. The goal was to follow Gareth Parry’s idea of 1/2 gram of Solumedrol every week for a month, and then tapering the dose to zero over time, but without needing to go to an infusion clinic. I did this while waiting for an immunosuppressant to kick in. The protocol seemed to work well.
Godspeed in dealing with prednisone.
~MarkEnsMay 13, 2012 at 10:36 pmFred,
To quote Anne Elk (Monty Python fans unite): I have a theory. Actually, it is a hypothesis, because I have not tested it with experiments. The hypothesis, though, is based on an observation. When I first came down with CIDP, I responded well and immediately to Solumedrol. While not asymptomatic, I was vastly improved by the next day. Clearly, that improvement could not have been the result of remyelination. I heard an explanation later that the Solumedrol, by reducing the inflammation, reduced the edema that was affecting the nerves and thereby resulted in a rapid response.
My hypothesis is that CIDP has two components, an inflammatory component and a demyelinating component. In most of us, the two are tightly linked. In others of us, though, they are not be so tightly linked. Perhaps, Fred, the reason IVIg/solumedrol works so well is that inflammation is your predominant nerve-damaging mechanism, but it does not result in much demyelination.
Part of the reason my neurologist does not like to do NCV tests (other than the obvious) is they are not always perceptive low levels of demyelination. He feels that paying attention to clinical symptoms is a better overall indicator.
~MarkEns
May 2, 2012 at 4:23 amJust to be clear, only the post by andersonllyod is spam. There were bracelets at one time. It looks like the Foundation removed the merchandizing portion of the website when it did the changeover.
~MarkEns
April 27, 2012 at 2:49 amLisa,
Thanks for the kind words. Actually, I have CIDP that is well-controlled and with minimal deficits, so I am definitely in a good place. My sympathies to your husband and you that he is not.
You might suggest to your neurologist that if there is an continuing disease process, rather than just residual deficits, then the delay means that much more damage will occur, making it even harder to recover. Hence, the hurry.
Godspeed in finding treatment soon,
MarkEnsApril 26, 2012 at 4:43 amHello Exosurf,
I would not be too concerned just yet; tests are sometimes skewed by other factors. Ask your doctor to repeat the test, making sure you are well hydrated when you do. If it is still low, then you should have a urine test done. If that is suggestive of kidney disease, then you should discuss the results with your primary care doctor, a nephrologist, and your neurologist. You might need to change brands, frequency, etc. of IVIg, switch to subcutaneous Ig, use an immunosuppressant, or use plasma exchange.
Hoping that the result was a fluke,
MarkEnsApril 26, 2012 at 4:32 amHello Shirley,
I would encourage you to see a neurologist as soon as you can. If you need a referral, make an appointment with your primary care physician today, letting the scheduler know that you are having a rapid loss in your strength. Also, if you have any trouble breathing, go to an emergency room right away.
~MarkEns
April 26, 2012 at 4:26 amHello Lisa,
UCLA, USC, and UCI all have well regarded neurology departments with specialists in GBS and other neuromuscular conditions. My doctor is with Kaiser Permanente in Downey. I consider him to be very good. If you are with Kaiser, let me know and I will provide his contact information.
~MarkEns
