In contrast, this year I am pretty active – within reason. I have gone to the park for picnics and sat outside at restaurants. Don’t get me wrong, I am not engaging in any touch football or beach volleyball (I never did that before the MS, to be honest) or much of anything else besides just functioning on these outings. However, there is not the panicky, frantic feeling of starting to lose various functions as the temperature rises – as long as I stay mostly in the shade. I will admit an occaisional “freak out” when the sun hits me directly, such as last week when crossing a huge parking lot with my daughter asking to be carried as she held onto my legs (everyone ended up crying). Also, the wrung-out feeling that usually follows an outside adventure is much shorter and can be reduced by sitting still with a cold glass of water or iced tea.
Here are some other observations/notes:
- Increasing Number of Hours/Days “Without” MS: Not only is the heat intolerance getting better, the overall amount of time that I get to live feeling like a person that doesn’t have MS is increasing. In my blog entry a couple of weeks ago, I said that this feeling came “about every third day for 2 to 5 hours each time.” Now, I can honestly say that I am up to every other day, with chunks of clear-headedness and physical “homeostasis” coming both in the morning and evening some days.
- Greater Ability to Concentrate and Mental Endurance: I thought multitasking was a thing of the past for me, as I would find myself completely forgetting who was on the phone if I tried to make a sandwich or fold laundry during a conversation. Now, I can report that I have once again embraced the bad habit of multitasking, making it a breeze to spend money that I don’t have on eBay during telephone business negotiations. Hooray. I also have much less mental fatigue after long meetings or social gatherings where I have to be “on” for extended periods of time. These circumstances still require a recovery nap, but I can be restored by a short rest, rather than out of commission the rest of the day.
- Paroxysmal Symptoms Gone: I also reported that I was having what I hoped were paroxysmal symptoms where I would lose most function in one leg for minutes at a time, several times a day. That has completely disappeared.
- Don’t Accidentally Double Up: About a week ago, I changed my bedtime routine slightly and washed my face and brushed my teeth before sitting down to watch a movie (a very rare occurrence in my life these days). Right before bed, I took out my contacts and took my LDN at the usual time, only to remember that I had already taken one when I had washed my face before the movie. Again, I am only on 3 mg, not the typical 4.5 mg, so it wasn’t a huge dose (especially considering that typical doses of Naltrexone used to treat opioid addictions are 50 to 75 mg, and can be as high as 150 mg in some cases). However, that measly 6 mg meant that I probably got about 45 minutes of sleep the entire night, as it kept me awake and tossing and turning. I wasn’t anxious or stressed, it was more of a “princess and the pea” feeling of not being able to get comfortable and feeling every wrinkle in the sheet and having every noise in the house amplified. Can’t say I recommend it.
- Time to Increase the Dose? While I had a yucky experience with my accidental double dose, I am thinking that it might be time to ramp up to the 4.5 mg typical dose of LDN. I keep asking myself, “What if I could feel even better?” Nobody gave me clear instructions on when the dose would be raised or signs to look for that would indicate it would be a good idea to increase the dose. I do know that I will take a Benedryl (as some people recommend) for the first week or so of my increased dose to combat insomnia.
One more note: I wanted to thank everyone again for sticking with me through this experience. I feel a huge amount of support from many of you and it has really helped. I have gotten a number of comments and e-mails from people asking why I am not blogging more often on my LDN experience – the timing of these entries is by design. With MS being such a variable condition, I felt like blogging daily or even weekly would not allow me to get a “big picture” of what is happening, as I do still have headaches, numb feet and bladder symptoms at times, some days worse than others. I also still have my daily emotions around MS that could “taint” a daily blog about anything. By getting a couple weeks at a time to reflect upon and monitor progress, I think I can be more objective and informative, rather than reactive to the day’s ups and downs.
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Please continue updating your LDN progress. My husband was diagnosed with Primary Progressive MS last August. We are desperately trying to find something to help him. His neurologist will not prescribe LDN and we don’t know where to go from here.
I am on Day 9 of LDN (will be Day 10 tonight)and while I never had the dream problem at all, I did have the sleep issues but now I am sleeping like a baby, bladder issues are totally tame-able, arthritis pains in knee and hips almost GONE, headaches easing a little but (haven’t taken my thryoid medicine and am feeling it so might have to start it again) not sure if that is the interaction with synthroid or not – hope not!!! and not quite as sick to stomach as I was – still weak and legs not as moveable as I want but am anxiously awaiting better mobility and heat tolerance!!!! It is GREAT reading about how you’ve gotten so far – I am encouraged!
For Becky, there are other ways besides your doctor to obtain LDN. There are doctors that will work with you over the phone to issue a prescription and monitor your progress. And there are pharmacies out of the country that will sell to you without a prescription. There is a large list on Yahoo where you can ask for help finding these sources.
Becky, You do not have to have a prescription to obtain LDN. And there are doctors that will work with you by phone and write a prescription as well as monitor your progress with phone consults.
“Now, I can honestly say that I am up to every other day, with chunks of clear-headedness and physical “homeostasis” coming both in the morning and evening some days.”
WOW! That’s incredible! Congrats!
I begin LDN again tonight (at 4.5 mg). (I had no trouble with 1.5 or 3 before, and my understanding of the reason for the lower starting dosage is to prevent the vivid dreams. Those were the most entertaining dreams I’ve ever had in my life [I was driving a jeep for Generals in a war zone in one and a brain surgeon in another - a very good surgeon, BTW, lol], so bring ‘em on!)
Here’s hoping I once again get to experience that wonderful feeling of the MS switch being turned off…it was wonderful. (If feeling hopeful helps, I’m half way there!)
And, Julie, I am SO grateful I was reading your blog when you mentioned it, or I would have never thought to connect it to the LDN. (Feeling mildly stupid over that one…)
Thanks!
Excellent. One correction to one of the posts here, you DO need a prescription to obtain LDN. There are some overses that may offer it without, but this is a powerful drug so don’t be tempted. There are plenty of doctors in the UK now (over 200) who will prescribe it privately and some on the NHS. Dr Lawrence does also work over the phone.
I have been taking it for 9 months now for SPMS and it works very well but I have too much leg spasm to get the dose over 3mg. Also be ready for a bit of worsening for the first few months, but not everyone gets that and it is temporary too. Also I recently found that using a catheter reduced my spasms hugely, and then I truly appreciated what LDN has achieved, but such things can easily make us feel it isn’t working enough when it is.
But, for those who use it correctly, and stick with it, the rewards seem to be great even if it can’t cure us. As I say, the NHS offers me the chance to be run over by the MS train at 40mph instead of 90mph, whereas the LDN has made the train stop, and even go away a little bit. Much better!
I am looking for a doctor.
I’ve known about LDN for awhile but until you, Julia, started taking it and telling us about it, I wasn’t interested. Now I am and I will find someone to give me the prescription. Thanks so very very much. You are a hero.
sharon
I was wondering if you’ve told your doctor your good news – will you have another MRI later to see if there have actually been any changes? And will he up your dosage?
Great blog. I wrote a book about my husband’s use of LDN for his PPMS. It is called Up the Creek with a Paddle. Please try to tune into my new LDN radio station to hear more stories.
All the very Best
Mary Bradley
I began LDN a month ago. I have had good days and bad. When I increased from 1.5 to 3.0 mg I seemed to have an increase in symptoms, but on the good side, I have more energy. I am doing more things. Since I take zanaflex and Lunestra at bed time I sleep pretty good except for an occastional weird dream or “chomping” moment. I am looking forward to continuing to progress.
I’m always glad to see LDN mentioned in the media, as so few patients and doctors have heard of it. Personally, I started on LDN in February of 2005, and I’m a huge supporter of it. It makes all the difference for me. I wish I’d tried it FIRST and never messed with Interferon or Copaxone…
Thank you Julie for introducing LDN to me. I will be starting it tomorrow along with copaxone. I feel that i must try it. my neuro doesn’t know alot about it from the MS aspect, but he has heard about using it for MS. So he said try it and we’ll see what happens. A friend also got a prescription after exploring the websites from the same neuro and we are going to start together. The buddy system. Hopefully I will be able to write back in a month or so about wonderful progress for both of us !!
Bwmbagus – I’m really interested to hear about your experience with the spasms and LDN – and the suggested dose. My mother is in this situation where she can’t sleep because of spasms, and is ready to stop using LDN after 1.5 months. She was previously taking an opioid based med to deal with spasms which seemed to work. could you contact me at selfish3274@gmail.com ?
Thanks
Nick.
I have had MS since I was 11 years old, I am now 37, I am on LDN now, and have noticed improvements. I have no more spasm’s, my balance has improved, but, I still use a wheelchair most of the time. I am on 4mg daily, taken b4 I go to bed. My friends/family are noticing improvements too, I hope I continue to improve? Time will tell ….