Julie's Low Dose Naltrexone Journal: Month 2.5

Okay, I’ll say it – I am feeling good. Let me qualify that by saying that, most days, I am feeling pretty great for a person with MS in the middle of the summer. If I were a person without MS who felt like this, I might not be quite as enthusiastic or impressed by my level of physical stamina, but I would still be pretty functional.

A quick review: I have RRMS, and I have been taking low dose naltrexone (LDN) at a 3 mg dose since April, combined with Copaxone (which I have been taking for a little over three years).

Since starting LDN almost 3 months ago, I have experienced many improvements in my MS symptoms, especially fatigue, cognitive issues and heat intolerance. Without getting too philosophical, I can say that the main effect of the LDN has been beyond just symptom management. I feel like I have regained parts of my life that these symptoms had stolen, as well as found a new perspective on how to deal with many of my remaining limitations constructively (rather than in a despairing, panicky way).

Here are some more specific examples of what I am talking about:

• Fatigue: I have mentioned in a couple of my posts that I have times during which I felt like a person without MS – a person whose systems are in homeostasis. Not tired, clear-headed, calm – it’s a little freaky, as you can imagine, not to be compensating for the yucky fatigue that is usually a constant in my life (and probably in many of yours, too). These "MS-free" episodes are coming more and more often. At this point, I have even had stretches that lasted from when I woke up until about 5:00 or 6:00 in the evening – during these times I honestly kind of almost forgot that I had MS.

  I will say that when the crash comes, however, it is a pretty crushing physical feeling – much like hitting a brick wall, then having the wall fall over on you. When this happens, it’s almost like concentrating all of the day’s fatigue into a couple of hours at the end of the. I’ll take it, given my propensity to go to bed before it gets fully dark some nights, but this fatigue “dump” might not be for everyone.

• Cognitive Issues: I feel like some of what I have lost in the swirl of MS-related cognitive dysfunction might be moving back in to the vacant, dusty corners of my brain. I see evidence of this in many places – for instance, I have been working long, long hours on a big writing project. In days past, anything piece that I worked on more two or three hours at one time would begin to resemble another language (not spoken by humans). Lately, I have written for 8, 10, even 12 hours straight and gone back to find that the result was not half bad, or at the very least, readable.

  As far as I can tell, however, the LDN has done nothing for my short-term memory. I am notorious for forgetting if I did something that I went into another room to do 30 seconds after setting out to do it. This is especially frustrating when the “errand” that I got up to accomplish involves taking my LDN in the evening.

• Heat Intolerance: The best way to tell you about this is to describe what I did on July 4th. I was outside squatting on a concrete slab at 3:00 in the afternoon, helping sort through 35 pounds of crawfish to cull the dead ones from the live ones (so we could then kill them). The heat index at that time was 103 degrees Fahrenheit. (I realize that WHY I was doing this is another story that calls my judgment and good taste into question. Suffice it to say that it was a family-bonding experience – please don’t hold it against me.) Anyway, I not only survived the experience, I really didn’t feel any worse after that kind of heat exposure. My husband reminded me today that last summer I was unable to function when it got above 80 degrees, often needing assistance to get to the car, which was parked in the garage - 20 feet away from the back door.

Suffice it to say that I continue to be thrilled with my LDN experience. Of course, I still have some nights of terrible sleep, but no worse than I had before starting. I still have some days of my old levels of fatigue, but they seem to be lessening.

I am going to ask my neuro this week about increasing my dose to 4.5 mg. I’ll keep you posted.

Read the full articles/blogs:

Low Dose Naltrexone as a Treatment for Multiple Sclerosis

Julie's Low Dose Naltrexone Journal: Preparation

Julie's Low Dose Naltrexone Journal: Days 0 and 1

Julie's Low Dose Naltrexone Journal: Week One

Julie's Low Dose Naltrexone Journal: Month 1

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