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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Okay, it's official. It's hot. It's humid. This means that for those of us with MS we have a choice - stay inside and be kinda mad and anxious about summer, or go outside and be REALLY mad and anxious about summer.

I'm bringing up these articles again to remind us that, even though it is that time of year, there are some things we can do to keep functioning the best we can. It is also to remind us that, if we feel a little slower, a little bit MSier, forget and drop things more, not to be too hard on ourselves. Get a glass of iced tea, get in the pool or inside and take it easy.

Read the full articles:

• An Overview of Heat Intolerance and MS
• Top 10 MS Cooling Products
• Tips to Combat Heat Intolerance for People with MS
• Make Your Own Cooling Products for MS Heat Intolerance

TMS (transcranial magnetic stimulation) is a therapy that uses magnetic pulses on the brain to create an electrical field in brain tissue. This can help "restructure" some neural pathways and shows promise as a therapy for drug addiction.

In addition, a company from Israel (Brainsway Inc.) has developed a way of using TMS for the possible treatment of multiple sclerosis. There isn't a lot of detail in the press release about this (see the article), but this type of treatment has two potential advantages - it is non-pharmecuetical (no drugs are taken) and it addresses neurological problems in a unique way.

While TMS could never "cure" multiple sclerosis (the "bad" t-cells would still be in the body), this type of therapy could help lessen or even reverse select symptoms of multiple sclerosis. Again, not many details are available, but a couple of other studies seem to support the idea that this kind of therapy could be useful.

Check out these abstracts:

• Improvement of hand dexterity following motor cortex rTMS in multiple sclerosis patients with cerebellar impairment
• Repetitive transcranial magnetic stimulation of the motor cortex ameliorates spasticity in multiple sclerosis
• A comprehensive review of the effects of rTMS on motor cortical excitability and inhibition

Okay, I'll be the first one to admit that there are days that I take my Copaxone 12 hours later than I usually do. I have also forgotten to take it altogether. There was also a day that I forgot I had already taken it and I ended up injecting myself with a second dose (that only happened once, to be perfectly honest). The first time I missed a dose, I frantically called the nurse, who said calmly, "Don't worry about it, Honey. Happens all the time. No harm done."

Low dose naltrexone is different than the other disease-modifying therapies. The CRAB drugs (Copaxone, Rebif, Avonex and Betaseron) are long-acting immunomodulating drugs. Naltrexone is not. Naltrexone has the mechanism of blocking opioid receptors and (probably) stimulating the release of endorphins, which happens shortly after it is taken. What this means is that there are distinct immediate effects of Naltrexone that we can feel, mostly in the quality of our sleep and in unusually lucid dreams.

What this means is that it is not a good idea to skip a dose or to take two doses of low dose naltrexone (LDN). You will feel it. Here is my experience:

• Skipping a dose: This was an accident. I was tired and simply forgot to take my Naltrexone. I slept better than usual, but when I got up, I noticed that I was a little slower than usual and had a little less pep. I only remembered that I had not taken my LDN when my third cup of coffee was not pulling me out of my "fatigue fog," whereas the day before, I was ready to tackle my day halfway through my second cup. By lunchtime, I was more tired than I had been in a very long time, which resulted in an hour-long nap that did nothing to refresh me. The rest of the day continued with a slow downward slide into complete and utter inability to think or function well - far worse than it was before I started the LDN.

  Taking my LDN that night, I mistakenly thought that I was fixing the problem and everything would be back on track. Not so. It was like I was starting the LDN back at square one, with teeny patches of sleep coming, only to be accompanied by horrible, lucid dreams - all the worse because I was not expecting them and was unprepared for them. It took about 5 days to get back to where I had been.

• Taking Two Doses: This one was also an accident. I was lying in bed reading, when I "remembered" that I had not taken my LDN. The capsule was halfway down my throat when I recalled that I had altered my bedtime routine and taken it earlier than usual, before watching a movie. It had pretty much the same effect as I described above, when taking a dose after skipping one the night before. Bottom line - no sleep, freaky dreams, bad idea.

Suffice it to say, I am increasing my efforts to stay on the "straight and narrow" with my LDN adherence, even putting in real effort to take it around the same exact time every night (10:00 pm, give or take half an hour).

Do any of you have any experience with forgetting a dose or doubling up? Even better, how do you all remind yourselves to take your LDN on time every night? Help us out and leave a comment below.

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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Learn more or join the conversation!
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