I am asked daily by my friends how I am doing on the LDN and what changes I am seeing. So,I decided to write, now that I have been on it for 2.5 weeks. Before I do, I want to thank everyone for supporting me and helping me get all the information I needed and still am looking for.
2.5 WEEKS Before I started LDN, wow 2.5 weeks ago. I was in a 10 week major flare up. This flare up caused me to go through 2 rounds of steroids only to continue to get worse. I was to the point of almost going into a wheelchair. I was in so much pain from all the spasms and joint pains, besides the MS the attack kicked in my Fibro along with the chron's. so, basically I was very miserable and crying constantly. I guess, now I will admit that I was hating life and at a point that if I was going to continue like this... I don't think I wanted to continue nor did I think I had the eenergy to fight through this attack. (wow, tears already are filling up in my eyes)
During the massive attack, I met so many more wonderful friends here on Facebook, that taught me about a drug called Low Dose Naltrexone (L.D.N.). I listened to them and started to research the best I could as the MS had really messed with my comprehension. I went to my Neuro and he said he wouldn't prescribe it because it was not approved by the F.D.A. and in the last 20 something years he prescribed it one time to a patient and that patient felt so well, that he stopped all his MS shots and he got worse, so my Neuro would never prescribe it again. I went to my G.P. who basically said she didn't know much about it and because it was an Opiod drug that I needed to see a Psych Doc because they are usually the ones that prescribe that. So, of course, I was getting worse and none of my Doc's would do something, or should I say try something that I felt might really help me. What could it hurt to try?
Now here I am 2.5 weeks later... I am sitting here typing this with a smile on my face. I am able to walk just fine without any walking device. My muscle spasms are still present but not nearly as bad as they were. I even have times that I see the rolling spasm and feel nothing. My pain level which was normally between an 8-12 on a scale of 1-10, is now probably between a 2-6. Which is wonderful. I really can't say that I see new things daily but I look back over a few days or a week and that is when I really can tell all the changes. I no longer am woken up 2-4 times throughout the night because of the pains. Now, I sleep good throughout the night and when I wake up (on my own) the pain is there, but the pain is not waking me up. That makes a big difference. I still need to take all my meds in the morning and after they kick in, I feel better and can go on with my day. My friends have said that I havelost the dark circles under my eyes and the pale color and now I have life back in my face. they are shocked to see me glide through the house, like nothing, just to get a towel for my son. Yes, I fell 1 time about a week ago and it was for no other reason then me rushing too fast through the house. It is hard to tell the difference between the pains of MS and Fibro sometimes because they usuallyare together and I am so used to it. But I believe the L.D.N. is working well with both of those diseases. I am still not at the normal dose, so I am hoping that in time, it will start to work on the Chron's as well. I have read that I need to get closer to 4.0-4.5mg for it to help with that. I may not get to that level because I normally have such horrible spasms, from what I have read, the closer I get to 4.0-4.5mg it may make the spasms get worse. So, we will have to wait and see.
Within 3 days of starting the L.D.N. I was out in the garden planting. which is something that I haven't done in over 4 years and was always one of my favorite things to do. I have spent a lot of time outside, of course until we hit the 90 degree weather earlier this week. During those days, I did laundry, dishes, organized some ofr the rooms in our home, did a bunch of paperwork, and a lot more.
I have learned that L.D.N. works so well and so fast that it is hard not to just take off and do as much as you possibly can. For people that might read this that don't have a condition like this or these. When you live your life on a day to day basis, never knowing what each day will bring you? Or what you will and will not be able to do. And all of a sudden you feel like you did before being diagnosed (it's been so long, that I really don't remember what that felt like) You don't want the feeling to end and you are so afraid that it will be gone the next day. So you take advntage of it and you overdo it. Only to find the next day and the day after that you still feel good. It is a hard adjustment. It is something I have to be reminded of often... Don't overdo it. I still have symptoms I deal with daily and have all hopes that in time they too will diminish some or all the way. I look forward to seeing where the L.D.N. will lead me and so many other people with Autoimmune diseases.
While on the subject, I learned that not only does it help with all the diseases that I have listed many many times. I learned that they are now saying that L.D.N. has helped with infertility. Wow, that is amazing for all the couples in the world that would like to have children and were told they couldn't. Maybe L.D.N. will help them as well.
6 WEEKS Over the last 3 weeks I have had a lot of stress in my life. Our family lost one of our best friends. We were very devastated. 4 days after his funeral we had to prepare for a family reunion that we haven't seen in over 10 years and we were driving. My schedule was very screwed up. There was good and bad stress during that time. I also had the flu during this time.
Needless to say, I have learned that STRESS can and will overpower the LDN. About a week ago things were back to normal, meaning we were home and trying to get back on routine. The heat has been very hard to deal with and we have had storms almost daily. I would have to say that I have not seen so much help or improvement from the LDN during this time. I started having really bad prickly sensations and pretty severe leg pains again. I do have to remind everyone that I am not just dealing with MS. I also have Fibro and a rarer form of Chron's. The LDN, I can tell is working but I can't point my finger as to what it is doing. I know I would be much worse without the LDN. I did go to see my General Practioner who manipulated my meds for the Fibro and so the prickly sensations are slowly fading. As for the severe Fatigue, I have No clue. I have a call into the Neuro to see if he has any suggestions on that and also the leg pains.
To sum this up. My feelings on the Low Dose Naltrexone is... Depending on the diseases you are treating. With Multiple Sclerosis and Fibromyalgia, at first, there are very good chances that there will be significant changes immediatley. However, then it starts working on things inside of you that is needed but not so noticeable. LDN is something that has to be continuous and takes time sometimes just a few weeks and sometimes months. I have noticed things like my hair and nails are growing and looking better, the rings under my eyes are gone, I feel like I have life in me. But at the same time I still have these diseases and LDN can not take that away. If I hadn't had the stresses over the last 3-4 weeks I do feel I would still be on a roll as I was before the incidences. I will continue to update on how I am doing as some of the stressors are going away.