NeuroTalk Support Groups - LDN Information & Check In

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- - LDN Information & Check In (https://www.neurotalk.org/multiple-sclerosis/50240-ldn-information-check.html)

Quote:

Originally Posted by lady_express_44 (Post 428023)

The pharmacist said using the right flavoring might be as important as using the right fillers (not too slow release, etc.) . . . Cherie

Wanted to clarify that I don't think flavoring has anything to do with the speed of release of the drug, just that apparently it does make some difference for efficacy. Both times that I tried other flavoring (banana and bubble gum, if I remember correctly), my symptoms were creeping back in. As soon as he got the right flavoring in, he replaced my rx with the Tootie Fruity/Raspberry, no charge.

Quote:

Originally Posted by FluteMaker (Post 428291)

i got lucky though, i caught on to the whole LDN idea early on after my DX. and tried it first before any of the crab drugs. it just made sense to me.
does LDN guarentee a stop to the illness? no. but neither do the crab drugs. does LDN guarentee a stop to exascerbations? no. but niether do the crab drugs.
does LDN guarentee anything? no. but niether do the crab drugs.
as long as its a matter of 6 of one-half dozen of another, why not make the 'another' one that i can actually afford and relisticly pay for?
i really am a stingy individual, but i dont see what good a medicine like copaxone is to someone who cant even pay for it.

I didn't try any other meds before LDN either, but I was 14+ yrs into the disease before I tried anything (not even steroids). There were several reasons I went that route:

- my neuro said the CRABs weren't likely to help my "type" of MS (mostly large spinal lesions, very few brain one's even that long into the disease)
- sensitivities/allergies to meds
- CRAB efficacy stats were not convincing to me
- report side-effects on the CRABs
- cost
- anecdotal evidence on LDN

I won't ever regret not trying anything else, but that is because I have been lucky that LDN has worked as well as I could hope for with any med. I do understand why neuro's recommend the mainstream meds first though, and I probably would too if I were in their position. Actually, I'd probably recommend Copaxone and LDN first. :D

Cherie

Quote:

Originally Posted by FluteMaker (Post 428294)

did you want a new puppy sally? come on down to the shelter, i can set you up
this is my new puppy

What a sweet doggy, you have...I don't need a puppy right now, but when I do, I will need an already trained, adult small doggy. I am unable to train a new pup..:(

Are you talking the Dayton/Kettering area?

Quote:

Originally Posted by SallyC (Post 428639)

i work at sicsa you nut.

ive got an MRI on thursday so i probably wont be in to work but ill be there about 1pm friday. we have a 5 year old long haired chicuahua right now named cody. he went up for adoption today.hes the only small breed dog we have right now, but we have connections with the ARC and the HSGD, plus we have new dogs comming in almost every day

Quote:

Originally Posted by Lady (Post 427843)

Hi mom2five, nice to meet you too. Is Utah a new place for you to live? You said you were unpacking.

Lady

We have been in Utah for 3 1/2 years. We are down south in the desert part of Utah...almost to Las Vegas...and we love it. We moved to a home about 5 miles from our previous home, so my teenagers didn't have to switch schools. The two in Elementary school had to change, but 1st and 2nd graders adapt very quickly.

I received my LDN only a week or two before the move. I don't know if I would have gotten through this move as well as I have without it. :)

I have a question for all of you...Has anyone had troubles with early morning headaches on the LDN? If so, do you think it was the LDN or something else?

I know that MS and sinus infections cause headaches, but I don't recall any that I could credit to LDN. :)

Quote:

Originally Posted by mom2five (Post 429322)

i cant blame my headaches on the LDN, ive had those for years

Quote:

Originally Posted by FluteMaker (Post 428840)

the MRI has been moved to teusday, so i'll be at work on time thursday.....1-6

Quote:

Originally Posted by FluteMaker (Post 429360)

the MRI has been moved to teusday, so i'll be at work on time thursday.....1-6

I need some help. I had pain in my calves before but now it feels like two knots on each calf and I can barely walk. Has anyone has this problem. I may have to stop the ldn if thats the problem. I'm going to call Dr. Skip and see what he says.

Quote:

Originally Posted by jnet1589 (Post 429397)

How long have you been on 3.5 mg consistently now, and when did the knots start? Are the knots a daily thing, or intermittent? You are SPMS, right?

I do think it is a good idea that you talk to Skip. I know a handful of people go through 2 - 3 of months of side-effects (kinda' like "re-wiring"), but I think my concern would be whether this is a new symptom for you. If this is spasticity, have you had that before?

Are you stretching daily, with a routine?

Cherie

Hi jnet1589,
Nice to meet you.

I have had pains in my calves, I call them Charlie Horse like pains. I had them prior to the LDN, which I only started two days ago at 1.5 mg.

When I don't walk enough, and then go shopping and do a lot of walking, I get them. If I am sleeping and stretch to hard the leg, I have to jump out of bed with the cramp.

Sometimes it is lack of salt or potassium in the diet. Others get it from lack of calcium and carbs. I also get toe cramps when I walk too much after being lazy and not moving enough. They really hurt.:eek:

Maybe these ideas will help you. Your calves aren't hot, red or swollen are they? Must watch out for blood clots or DVT at anytime you have leg pain.

I would call the doctor if it was something new for you. Good luck
Lady

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