Sitting here on ignore

On the phone on ignore…

My neurologist just switched me from Tecfidera to Vumerity. They are essentially the same medication so that is not a big deal. So they helped me get a grant from the HealthWell Foundation to help pay for my copay. That is wonderful. I simply cannot afford a copay of over $2000 a month, as I am sure that many people cannot.

After making phone calls all day to my insurance company, the specialty pharmacy and the man in the moon I am now trying to call the Healthwell Foundation for some information from them for my insurance company. There is one thing that they have on their phone line that is a double-edged sword.

When I first called about 20 minutes ago, the phone system came on and told me there were 275 people ahead of me. I don’t think I have ever had a system tell me that before. But now I have them on speakerphone and 20 minutes in they just told me that there are 192 people ahead of me. That is where the double-edged sword comes into play. First, it is great to know how many people are ahead of you. And by listening to the numbers you can gauge about how long it will take for them to get to you. The other side of the sword it “192 people! This is going to take forever!”

The system comes on every two minutes or so to update on how many people are waiting. I have found myself not really listening, but I do pay attention to the numbers. I figure when we get under 50 people ahead of me that I will start paying more attention, otherwise it is just depressing to some degree. The system does give you the option of saving your place in line and getting a callback. I have done that before and not received a call back. That was not with Healthwell, but you know what they say, once bitten twice shy.

Some history about me

Here is a little history about my journey with MS. Don’t worry, I will tie it all together in a moment. In 2002, I had Optic Neuritis (ON). The neurologist I had at the time was a jerk as far as I am concerned. He said that he was convinced that I had vasculitis. Specifically, vasculitis of the brain. I told him to go ahead and test me. That is until he wanted to biopsy my brain. I put the brakes on there. I told him that I had three functioning brain cells and he was trying to take two of them.

News regarding ON and Multiple Sclerosis

Today EBioMedicine, a publication of “The Lancet” has an article entitled “Identification of two highly antigenic epitope markers predicting multiple sclerosis in optic neuritis patients.” Epitope is the part of an antigen molecule to which an antibody attaches itself.

What this article boils down to, is they have found two biomarkers that can predict if an ON patient is having a one time bout of ON or if the ON is a sign that the patient is going to develop MS.This is the first publication of something like this. That means that there is still a LOT of research that needs to be done to verify the findings. It is this way with anything in the medical field. Something is found through research and then the real research begins. I am not sure how they can go about this research in a quick way. I don’t know if they need to test people with ON then follow them for months or years of if they can use people that have already been diagnosed with MS.

That is one reason that I am extremely happy at times that I am not a research scientist. To answer that question requires more research into that question before you can get into the research for the original question.

Still good news for the MS community

This is still good news for many people that may have ON and are wondering if they are going to develop MS. Yes, it will take a few years, more than likely, to get this into common use by the medical community. But any advancement that can help diagnose or predict Multiple Sclerosis is a huge help to people. There have been studies that have shown that the earlier a patient can be placed on a Disease Modifying Therapy (DMT) the better the long term outlook for the patient.

This is all for now. As usual, my hope for everyone is a wonderful, pain-free day!



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