Hope you got your scooter fixed, Sally. :hug:

Nothing new here. Still on the same 4.5 mg. dose of LDN.

I have my semi-annual Neuro appointment tomorrow. He will do the standard "tests", run his keys down the bottom of my foot and check my eyes. Tell me I need to be on Betaseron and say "see you in six months"!

I’ve been doing rather well. The hot weather is losing its grip on me, and I’m trying to convince myself that fall is the perfect time for me to redouble my efforts to take better care of myself.

With all the stress (in-laws dying) of this past summer behind me I have a renewed sense of accomplishment. Gerry is a painting contractor, and this time of year he is really busy, so I have stepped up to handle the details of my in-law’s estate. I haven’t felt this useful in a very long time.

And I have another new project. I’m very excited. When we built our house fifteen years ago we had to take down a lovely but rickety, 100-year-old barn because it was too close to the property line. Now Gerry and I will be replacing that barn with – drum roll – a new barn!

http://i101.photobucket.com/albums/m...5/The-Barn.jpg

It’ll be my job to make sure it gets done properly. I’ll probably bore you with updates, so be forewarned.

Thanks for the great update, Marion..:You-Rock:

Okay I'll try this again. I couldn't get on the last few days. :confused:

Marion, I love that barn, it is great. It's also huge. Are you putting your cars in there? Enjoy supervising your new project. :)

Jappy, that is awful. I'd kick that neuro to the curb. "Don't bother", how can a doctor say that? Does he mean if you got another MS problem he would not treat you because you are on LDN?

Eddie, just keep on exercising, that will help increase your endorphins. Maybe not as well as LDN will do though. My mood is always great since I am on LDN.

Sally, what you are experiencing sounds more like being overwhelmed. That is something we can't help, I get that too. When too many problems/issues hit us at once only fixing the problems or forgetting about them, if minor ones, will help us. I hope things start looking up for you. :hug:

Kitty, how was your Neuro appointment? Anything new?-a good one I hope.

With the heat and humidity, I have been so hot even in A/C I still have those burning legs and feet that never seems to go away. I don't sweat so I get red in the face and put cold water on myself very often.

I am so happy the weather is cooling off. Whew! I get out to see family and do some stores now. Sleeping is great with the windows open. Ah, fresh air.:)

My appointment went well. Nothing new. He was impressed with how quickly I recovered from my bout of ON from back in February. He checked my eyes and said they looked really good. My balance has been better and he even commented on the fact that I could stand with my feet together and hands out and not fall over. Of course, I only stood there maybe five seconds.....but I didn't waver! He was impressed with my weight loss and said whatever I've been doing to keep it up. Oh, and he said "see you in six months"! :)

Lady,

The “barn” is a two-car garage with additional storage both next to where the cars go, plus upstairs on the second floor. We don’t intend to use it as a garage. It’ll be for storage. Finally we’ll have no house painting ladders or scaffolding piled up somewhere in our yard!

Since we converted our attached two-car garage into a physical therapy room with a swim spa pool, we figured that adding a two-car garage to the property will increase its value. Plus we are going to put solar on the south-facing side of the roof, which will help heat our hot water and the water in the swim spa. These days our electric bill is out of this world, and we really could use some relief from that.

To me the coolest part is that we’re going to have a weathervaine on top of the cupola (that thingie on the roof).

I am such a slacker on updates...
 

so i have been MIA again... ( sorry i know i said i'd be on here more :sorry: ) but here is my LDN update...

I am rolling up on 2yrs now of LDN.. still no new Sx or exacerbations. and my neuro said and i quote: " that stuff will never work." pfft.. sometimes i wonder about her when the proof is right in front of her that indeed it does work for some MSers...

anypoop.. i have been feeling pretty OK.. i mean i have had some old Sx show up with heat and humidity but noting that lasts for more then a few min or if i really over do it i have to sit in the A/C for 15min or so to cool down then i am right back to "my" normal.

still my biggest complaint with LDN is the surge of energy. and lack of a normal sleep pattern anymore.. ( not really a bad thing but i only get about 4hrs of sleep a night, then have to take a 2hr nap later in the day to get my normal 6hrs) but that is the worst side effect ( if you can call it that) that i have had in the last 2yrs...

I am going to go get an MRI probably in November just to see if it is indeed slowing the monster down.. I have not had one since before i started LDN.. so i hope i have something to make my neuro think about.. and ya know what even if there are some new lesions.. i don't care because i feel good.. and ill take that over flu Sx any day. i know some may not agree with that but its cool we all have our own way of smacking our monster into submission..

ok i am out all :grouphug:
-Andrew

Just an update from me. I saw my Neuro, I'm doing well she said. I have some new pain from banging my head and neck so she said to up the LDN from 3 mg to 4.5 for the pain. :)

Yikes! She is a believer, but the PCP gives it to me. She said it has helped me so much over the almost two years, and to keep it up.

Like I would ever stop it. Duh! That's my good news. :grouphug:

Ldn r neuropathy
 

Hi

I don't have ms but suffer a lot of neuropathy and cramping and twitching pain. Stabbing shooting pain.
No diagnosis yet

Has ldn helped anyone wiyh neurpathy

Thanku
Tulips

I really don't know, Tulip, but I would imagine it does. I have known people with both MS an Neuropathy to use LDN.

Why don't you ask this question in the Neuropathy Forum, here at NT.

Good Wishes to you..:hug:

Hi Tulips,
When I recently hit my head it caused nerve pain in my neck, I banged the side of my hard. It knocked out the alignment of the natural curvature of the C-spine, just enough to impinge upon a few nerves.

It hurts more in the late evening, after daily use. But in seems that the LDN does help it during the night, and most of the early hours of the morning. It dulls my other pains too, but I am not sure if they are nerve or muscle related. But since nerves are attached to muscle it might help.

What do you have to lose by trying it? Nothing? If it works then you benefit. Neurontin and Lyrica were supposed to help with Nerve pain but did nothing for me when I needed it.

I had Lumber nerve pain and Ultram (Tramadol) took the edge off of it, 15 years ago. I still needed surgery anyway for a spinal cyst that was compression the cord and the nerves branching downward, over time as it grew. It gave me a sciatic-type leg pain as that is a nerve. The Sciatic nerve.

There wasn't LDN back then. It think by LDN increasing the endorphins, the feel good hormones, that helps me endure most pain issues. The burning feet and MS hug are not really helped. I don't know the cause of those, just MS related, each dr has an opinion. Lol

But pain is pain. Central, regional, or neuropathic. Try LDN. It is cheap and can't hurt you in the low dose that it is taken. I have taken Ultram a few times with the LDN, no problem.

Call Skip's pharmacy, if/or you get a script. He might be able to help answer your questions. Good luck to you and feel better. :)

I read LDN helps rid the brain of excess Glutamate. This follows..

"Thus, while the Mayo researchers propose finding ways to block glutamate, the benefits of low dose naltrexone and beta lactam antibiotics lie in their ability to reduce glutamate excess"

I was looking into amino acids to boost growth hormone to heal me quicker from exercises. Glutamine is what's in 1 of the combo pills. The other is L-Ornithine + L-Arginine.

I never found any one that could tell me the difference between Glutamine, Glutamate, Glutamic Acid.
Glutamic Acid = 1 of the 4 Copaxone ingredients.
Glutamate = no good by what I read for us.
Glutamine = ?

Another reason that LDN is a good thing..:D

Eddie, you're really getting good at this research stuff. I wish I could help you but I am still feeling a bit sick from my recent infections. Yucky..sleepy.

My brain is so foggy, I'm not functioning on all cylinders. I napped most of the day, now I'm up with the night owls. :o

I am still taking my LDN, it is still is helping me. :)
later..

Medication question
 

Can anyone tell me if it is okay to take my LDN, Neurontin and Zanflex at the exact same time? I normally have taken my LDN and Zanaflex, but now my neuro has added the neurontin.

I take them around 10:30 to 11:00 PM
Just wanted to make sure I can take all of these in the same mouthful!!

Call Your Chemist= Skips and ask. I would separate them, but thats me and I didn't like Neuronton..:D

Skip is my chemist....so I should call.

How much would you separate them?

Why didn't you like Neurontin?

Hi Daisy,
I would check them out with Skip too. I weaned off of Neurontin to go on LDN. I was up to 3600 mg of Neurontin and it stopped helping me. I took Neurontin for 5 to 6 years. I had to wean off very, very slowly. It is for sensory symptoms, and is sleep inducing for some.

It is really for Epilepsy but used off-label for MS.

Some people take small doses. What dose are you starting on? It is addictive, believe me. Your body craves it after a while. Some people can't take it at all.

If you decide to take all three. Please space them. JMO :)

thanks guys...

I am taking the Neurontin for seizures, as well, my neuro thought they would help the terrible leg pains I have at night. The Zanaflex makes me a little relaxed, but really does not touch my leg pain.

I just started the Neurontin one week ago, I am taking 600mg 2xday, but will be working up to 900mg 3x day (I think)

My zanaflex is 4mg.

I am trying to figure out the best way to take them all. ...how to separate them?

I just didn't like the way it made me feel, kinda groggy. I was taking it for feet burning. I didn't have to wean off it, because I was still on the low dose and didn't take it for that long.

Do you need both the Z and the N? Maybe the N would be enough, if it did it's job?:hug:

I called and talked to Skip today.....He said it was fine to take all three in one mouthful.
Right now the neurontin is not helping me to sleep....my legs just ache, like a toothache, it is terrible. If the Neurontin would take away the leg pains, I wouldn't take the Zanaflex. If fact, that is what I tried last night, but had to get up around 2 and take the Zanaflex. Maybe when I get to a high enough does of the Neurontin I won't need the Zanaflex.

Has sensory returned for some of you or just stopped losing it?

I've had no changes to my sensory issues but my heat intolerance is drastically reduced and I have way more energy. About six months before taking LDN I began having trouble with my right eye being very dry. After a few weeks on LDN it returned to normal. I didn't change anything else and thought I'd just have to live with it. Bonus.

I've had no progression of my sensory stuff, but it wasn't progressing before I started LDN a year and a half ago.

C

all great news Carol..:):hug:

still have the numbness and tingling in the legs and arms, worse when I lay down. MS hug is better in the day and worse at night too. Same with the burning legs and feet.

So I guess LDN helps in the day, but wears off a few hours before I take it again, hence the worsening at night.

They say blocked jugulars are worse when laying down so maybe I will get a surprise with the CCSVI. However, it all remains to be seen as time passes. I will continue taking the LDN. It helps my balance. I stopped running into walls.

Nothing sensory has worsened on LDN, some got better, like my thighs pain and spasms. I had only one relapse when I usually get two a year.

@Carol, so happy to hear you're doing okay. Your energy and eye is better, that's great. Do you live in a year round warm/ hot location?

It's so cold here I don't remember my heat problems, but I don't sweat so I can't tell right now anyway.

My energy was better until I got zapped with the Flu and now a cold. I'm glad your dry eye is gone. I have dry eye in my right eye too. With this cold it is not dry, nor is my nose. :cool:

I haven't had a cold in two years. I have been on LDN two years. I started Dec. 2008. I think I'm a bit holiday stressed, or overwhelmed. I think of snow and cringe. Nice to hear from you.

Hi Lady,

I live in a fairly moderate climate, just north of Washington state so similar weather to theirs. We can have some pretty warm weather in July and August. It wasn't just the weather that got to me - it would also be when the kitchen heated up cooking a large dinner, doing a lot of housework, visiting someone with a warm house, driving in the car with my husband... In the middle of cooking Xmas dinner, I would often have to go and stand outside to cool off.

Until last summer, I don't remember when I let myself get hot enough to get sweaty. We had some really hot days this past summer and I sweated a lot but I didn't wilt. Prior to LDN I would have been on the couch in front of the AC, barely able to think. Last summer, other people were complaining about the heat before me and I was able to function through it all. That never happenned before LDN.

We're having a cold winter so far and it's supposed to be the coldest and snowiest since 1996. We've already had our first snowfall and we're just not equipped for snow here in Victoria. I feel your pain. I stiffen up when it's cold out.

I hope you feel better soon. Getting sick at this time of year is the worst! There's way too much to do.

C

Hi All, just checking in, after the rush of the holidays. I know, it's not the New Year yet, but I don't celebrate that event:eek:, anymore.:D

I made it thru all the excitement, anxiety, depression, stress and fun of Christmas.:p If it weren't for LDN:hug:, I'm positive I'd be in the middle of a flare, in the hospital with exhaustion or, at the least, sick with the flu bugs, to which I've been exposed.:eek:

How are you all, my LDN buds?

Thank you Dr Bahari and RIP.:hug:

I've been doing alright. Had a cold but managed to get over it without incident.

I've been having some strange sensory sx lately and just left a message for my Neuro's office. I think it might be a painless migraine. I've been having big green splotches in front of me whenever I close and reopen my eyes. And my ears are ringing. None of it is painful but it's just hard not to notice.

I've noticed that the spasticity in my legs has gotten worse as the weather has gotten colder. But, I'm another year older now....so that might have something to do with it, too. :o

I'm still taking my 4.5 mg. dose between 12 - 3 AM. I guess the only way to know for sure if it's working is to stop taking it and I'm not goin' there! :cool:

frustrated and confused!
 

I was dx in Jan 2010 with RRMS. Also in Jan I had an MRI that showed approximately 10 lesions. I chose not to start a DMD and went with the LDN. I have not missed more than one or two doses since starting it.

I had a new MRI in October.....but just saw my neuro today. He said the current MRI showed 5 new lesions in my brain.

He is the one that has prescribed the LDN for me, and was very current on the research......however, today he told me that the most recent studies are showing that it is not working for MS patients.

Now he wants to begin Tysabri......

Anyone else had this experience with LDN?? I was really hoping and praying that it would work for me! Things are getting worse, so I have to do something else.

I'm so sorry Daisy. LDN, like any other med, including Tysabri, doesn't work for everyone.

I hope Ty is your magic bullet.:)

Talk to Riverwild and others in the Tysabri sticky and all my good wishes..:hug:

Let us know how it goes.

Daisy I am sorry to hear that the LDN didn't help. Did you get symptom relief of any kind while taking it? Did it help in someway?

Lesions come and go. A MRI is just a picture of the brain that day. Did the lesions show enhancement (bright spots with GAD)? Did you relapse of feel worse this past year? Just curious.

I was off LDN for two and a half weeks due to pain meds I had to take, and conscious sedation, during my 2 CCSVI procedures. I felt the difference in a day or two from not being on it.

Can you take both Ty and LDN? They may compliment each other. I know the increase in endorphins I missed right away. My mood was cruddy. I am back on LDN again and it helps me alot. I wish it heped you Daisy.

I hope you do well on Ty if that is the one you choose to take. Good luck to you. We all have to do what we feel is best for ourselves. No two alike. :hug:

I truly haven't felt any remitting since being diagnosed in Jan.....in fact, I asked my neuro if he would still consider me RRMS since I have not have a period of remission.....I actually have increased symptoms.

I don't know if the LDN helped me at all.....I really never felt any different on it.

I was against the ABC-R, because after my research, up to 29% effective just wasn't enough to put myself though the side effects......and I read so much about people that did not respond at all on the ABC-R's.

But now that I have more symptoms and more lesions, honestly, I am scared to do nothing. My neuro suggested the TY or Gilenya.....in fact, I am not comfortable with either, PML with the Ty and the newness of Gilenya. my neuro stated that we could start with the Ty (because no PML in the first year) and then switch to Gilenya after it has some actual data on patients using it.

I am really disappointed, I so wanted to be one that the LDN worked for.

LDN and Tysabri ok together?
 

hi all - I've had 5 tysabri infusions but want to start LDN. It's ok to take them together, right?

I'm not sure Roady. Best to ask your Doc or pharmacist. Maybe someone else here can tell you.

Welcome to NeuroTalk.:)

my MS doc said she was ok with LDN, but I think I asked about it before I started the tysabri... but yeah I'll check back in... any other thoughts out there? and/or people doing the combination?

thanks!

Hi Roadaction,
Welcome to Neuro Talk. I have heard of people taking both Ty and LDN. Even Copaxone is okay. Just the Interferons iare a no-go.

It also depends how long you are on Ty. If you just started, it is better to see if Ty is helping you..then add LDN so you know which is working or not.

I am not a doctor so ask your Ty doctor at infusion time. Some Neuro's may not know for sure. The Touch program may have protocols you have to follow. When is doubt ask. Good luck to you.:)

My neuro gave me LDN while on Ty but I only took it a few nights because of sleeplessness from LDN & dry mouth bothered me.

New to LDN & Forum
 

Hi,

I'm new to this forum and also just started taking LDN about a month ago. I'm taking 1.5mg and will go up to 3mg tonight or tomorrow night.

I'm wondering if LDN has helped anyone with brain fog and energy. These issues are really hard for me. Along with balance and coordination. The LDN seemed to help initally but am not so sure now. I'm hoping increasing the dose will help. Have other people found that increasaing the dose helps to reduce symptoms more consistently?

I have a brain injury (atrophy to part of brain) from severe infection decades ago. I do not have MS but since there are some symptoms in common and LDN, I thought I'd post here. I'm glad to have the opportunity to connect with others who have neuro challenges!

Thanks!
-Hazzell :)

Hi Hazzel, welcome to NeuroTalk and to LDN.:)
I started on 3mg in April of 2003 and went up to 4.5 a couple of yrs? later. I didn't notice any difference, but I was already on an optimal dose.

You are on a pretty low dose, lower than is recommended, so you may notice LDN working better at 3mg.

Good luck and please stick around to enjoy our forum and to keep us posted..:hug:

Hi Hazzell,
Welcome! That is a hard question. I know it works for MS people, in many ways, but you don't have MS but a brain injury from the past.

I don't think any of us knows if it will help you. It might with energy, some pain relief, elevate your mood with higher Endorphins in the body. I am thinking it can't really hurt you in such small doses we take, so it probably won't hurt you to try it. Never use the slow release form.

Have you read the LDN website? It may have more info there. Nice to meet you and good luck to you.:)

http://www.lowdosenaltrexone.org/index.htm

.