Sigh...
/
If I have learned any practical skill from my health issues, it would be this: I am darn good at medical research.
It doesn't hurt, though, that I have access to medical journals by being a grad student.
Anyway, I've been having weird tingling, numbness, and lack of feeling in my hands and feet. It comes and goes, but in one instance I picked up a hot pan and the burning didn't register until I had blisters. So, yeah, it's more than just an annoyance. We've done tests, and - long story short - my neurologist has prescribed a supplement called Metanx (research it if you want all the deets, but it's basically a mix of folate and B vitamins that helps with peripheral neuropathy, which is my diagnosis, and can be used for other reasons too, like folate absorbency issues). Well, technically it's a medical food, which is different because medical foods are semi-regulated by the FDA and allowed to make claims about disease treatment (whereas supplements are not). I got it filled today and was optimistic, especially about treating this without adding more crazy chemicals into my system.
And before I took it, I did some research. (Of course. Because that's what I do!) And I'm not taking it tonight. Not because there are any red flags for Metanx; I researched that a few days ago when my doc wrote the script. The red flag is the generic I was given.
I was given Neurpath-B. On the Metanx website, though, I found this. It's a letter to pharmacists and other medical professionals from the folks at Metanx saying that Neurpath-B isn't the same and is mistakenly linked as a generic. I am a bit skeptical, because it is in Metanx's best interest if generics aren't used, but I found a lot of info about the makers of Metanx successfully fighting another so-called generic, Folast, earlier this year.
Well, Folast was made by Brookstone. Neurpath-B is made by Acella. And...drumroll, please...Brookstone changed its name less than a year ago to Acella.
So quick summary here: the medical food product Folast used to be considered a generic for Metanx, and PamLabs (Metanx makers) fought to have removed as a generic. Now the makers of Folast have another so-called generic for Metanx. And that's the one I got.
So in the morning, I'll be calling my pharmacist and my neurologist. I'm not just blinding trusting the interwebz. All this could be misinformation. Once I have any updates, I'll post 'em on the blog and link up here.
Advocating for my health is a part-time job, one that I've gotten pretty dern good at. A lot of people don't know, though, that patients need to be their own advocates and researchers. I love my doctors - and it is a huge blessing to say that, because I have several specialists but not one bad apple - but they have a lot of patients and I don't expect them to know every detail of my complex health mess. That's my job. And it's my job to hold them accountable as a partner with them in my health. In simple terms, their job is to know their specialty, and my job is to know mine, which is my health.
I do it well. I just wish that it wasn't necessary and that it was a bit less complex. 'Cause, you know, there are other things I would rather spend my time doing.
(P.S. - I'm pretty sure only I could come home from an appointment with the neurologist about lack of feeling in my hands and feet and then drop a piece of furniture on my foot and fracture it. That's what I did Monday. And now? I have plenty of feeling in my foot, just not the type of feeling I was going for. I do appreciate the irony of the situation, and I'm glad God has a sense of humor.)
It doesn't hurt, though, that I have access to medical journals by being a grad student.
Anyway, I've been having weird tingling, numbness, and lack of feeling in my hands and feet. It comes and goes, but in one instance I picked up a hot pan and the burning didn't register until I had blisters. So, yeah, it's more than just an annoyance. We've done tests, and - long story short - my neurologist has prescribed a supplement called Metanx (research it if you want all the deets, but it's basically a mix of folate and B vitamins that helps with peripheral neuropathy, which is my diagnosis, and can be used for other reasons too, like folate absorbency issues). Well, technically it's a medical food, which is different because medical foods are semi-regulated by the FDA and allowed to make claims about disease treatment (whereas supplements are not). I got it filled today and was optimistic, especially about treating this without adding more crazy chemicals into my system.
And before I took it, I did some research. (Of course. Because that's what I do!) And I'm not taking it tonight. Not because there are any red flags for Metanx; I researched that a few days ago when my doc wrote the script. The red flag is the generic I was given.
I was given Neurpath-B. On the Metanx website, though, I found this. It's a letter to pharmacists and other medical professionals from the folks at Metanx saying that Neurpath-B isn't the same and is mistakenly linked as a generic. I am a bit skeptical, because it is in Metanx's best interest if generics aren't used, but I found a lot of info about the makers of Metanx successfully fighting another so-called generic, Folast, earlier this year.
Well, Folast was made by Brookstone. Neurpath-B is made by Acella. And...drumroll, please...Brookstone changed its name less than a year ago to Acella.
So quick summary here: the medical food product Folast used to be considered a generic for Metanx, and PamLabs (Metanx makers) fought to have removed as a generic. Now the makers of Folast have another so-called generic for Metanx. And that's the one I got.
So in the morning, I'll be calling my pharmacist and my neurologist. I'm not just blinding trusting the interwebz. All this could be misinformation. Once I have any updates, I'll post 'em on the blog and link up here.
Advocating for my health is a part-time job, one that I've gotten pretty dern good at. A lot of people don't know, though, that patients need to be their own advocates and researchers. I love my doctors - and it is a huge blessing to say that, because I have several specialists but not one bad apple - but they have a lot of patients and I don't expect them to know every detail of my complex health mess. That's my job. And it's my job to hold them accountable as a partner with them in my health. In simple terms, their job is to know their specialty, and my job is to know mine, which is my health.
I do it well. I just wish that it wasn't necessary and that it was a bit less complex. 'Cause, you know, there are other things I would rather spend my time doing.
(P.S. - I'm pretty sure only I could come home from an appointment with the neurologist about lack of feeling in my hands and feet and then drop a piece of furniture on my foot and fracture it. That's what I did Monday. And now? I have plenty of feeling in my foot, just not the type of feeling I was going for. I do appreciate the irony of the situation, and I'm glad God has a sense of humor.)