NeuroTalk Support Groups

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

lady_express_44 10-18-2008 11:29 AM

Well the spasticity started to hit about 2 weeks ago, just like it does every Sept/Oct. I persevered at 4.5mg for about a week, then dropped down to about 3.5mg this last week. Feeling good now . . . but will go back up in about 2 weeks.

Sounds like everyone is doing ok, which is good. Frank is still overdoing things, I see . . . and it sounds like TwinkleToes is following suit. What am I going to do with you guys/gals? :cool:

Cherie

Kitty 10-18-2008 11:43 AM

Cherie, October is my "month", too. I was dx in October and I have some sort of flareup around this time each year.

I'm still taking my 3.0 dosage each night and have been feeling pretty good. Other than the dizziness I've not had too many other sx. My vision, which I thought was going to go double again, has improved.

Since heat bothers me so much you'd think that I'd improve as the weather cools off. Oh well, at least with MS you always have a surprise waiting for you!! :rolleyes: Nothing is ever the same!! :D

lady_express_44 10-18-2008 12:09 PM

Just curious, Kelly . . . when you have these annual "flare-ups", are the symptoms always limited to dizziness/vertigo and eye problems?

This time of the year was always difficult for me (change in weather to cold), but the ONLY "new" symptom that still plagues me every year at the same time (since I've been on LDN) is the spasticity. I can work around that by reducing the LDN for a few weeks, so I am satisfied with that result. It never results in a an all-on attack, like pre-LDN anyway. :)

If heat is your problem, I'm hoping the change to cooler whether will help your symptoms.

I still have plenty of MS-symptoms on a daily basis ~ things are just WAY better with LDN (for me).

Cherie

Kitty 10-18-2008 12:40 PM

Quote:

Originally Posted by lady_express_44 (Post 390714)
Just curious, Kelly . . . when you have these annual "flare-ups", are the symptoms always limited to dizziness/vertigo and eye problems?

This time of the year was always difficult for me (change in weather to cold), but the ONLY "new" symptom that still plagues me every year at the same time (since I've been on LDN) is the spasticity. I can work around that by reducing the LDN for a few weeks, so I am satisfied with that result. It never results in a an all-on attack, like pre-LDN anyway. :)

If heat is your problem, I'm hoping the change to cooler whether will help your symptoms.

I still have plenty of MS-symptoms on a daily basis ~ things are just WAY better with LDN (for me).

Cherie


My sx are usually always either dizziness/balance problems or visual problems. Last October my right hand went numb and it is still numb so I'm not sure if that will ever correct itself or not.

The dizziness is better....actually getting a little better each day...but I know it can take months for it to be completely gone.

I've gotten alot of the use back in my right hand, too. I can write now!! It gets tired quicker and if I use it too much it becomes painful but nothing like it was in the beginning.

As the weather cools off I find that my fatigue sx are greatly relieved. Like you I have plenty of "little" sx but with the addition of LDN they are much reduced! :)

Tree55 10-18-2008 02:55 PM

I had to jump in on this discussion of October being "the month." I just recently have developed the balance/lightheadedness/head problems this past week. I also had this develop last year around this time. So far (knock on wood) it hasn't been as bad as last year. I've been on LDN for about 17 weeks now.

My first exacerbation after being diagnosed was the dizziness which was enough to put me in the hospital and steroids.

It must be something about October that causes our flare-ups.

Twinkletoes 10-18-2008 03:08 PM

Quote:

Originally Posted by lady_express_44 (Post 390687)
Well the spasticity started to hit about 2 weeks ago, just like it does every Sept/Oct. I persevered at 4.5mg for about a week, then dropped down to about 3.5mg this last week. Feeling good now . . . but will go back up in about 2 weeks.

Sounds like everyone is doing ok, which is good. Frank is still overdoing things, I see . . . and it sounds like TwinkleToes is following suit. What am I going to do with you guys/gals? :cool:

Cherie



Cherie, that is SO weird that you can predict your spasticity returning at this time every year.

So when you drop down to 3.5, do you alternate days taking 4.5 and 3.0 to achieve that dosage?

marion06095 10-18-2008 03:25 PM

Every summer I vow to try to be more active when the weather gets cooler. This year, thanks to LDN, I’m actually doing it. I do over do it once in a while, but I just can’t stop pushing the envelope. Since I am much more ambulatory I have revisited some long-forgotten aches and pains. For example, I had nearly forgotten that I have a bunion that barks at me when I walk a lot, and my knees have been grumbling at me a bit too. I expect that will be less of a problem after my body gets used to the new and more active me.

Desinie 10-18-2008 05:55 PM

I had tried LDN about 2 years ago for 3 months and I think I felt worse on it although I wasn't feeling too good when I started it. I'm also on Copaxone and have been the past 9 years. I was taking 3.0 mg. I don't remember right now what months I was taking LDN.

Anyhow, what the point of my post is that I'm thinking of trying again. I got a new script from my neuro when I was there on Wednesday. A friend told me that it can take 9 months to a year to notice the full effect of LDN. I also have an MRI of my full spine ordered finally (my first ever MRI of spine :rolleyes:). I get that done November 5th. I've been having pretty bad mid back pain for awhile. Those of you on LDN for a year or longer, how long was it before you really noticed LDN was helping your symptoms? Thanks in advance for replies.:hug: My thanks button isn't working still since I got a new laptop last month with Vista on it.

weegot5kiz 10-18-2008 06:17 PM

Des as for full effect as usual with ms and meds thats an individual thing, but i cleaned myself up of all my other meds before starting LDN and started at 1.5 and got to say, even though i wasn't sure what did it, but it didnt take me long to feel better I am also on C and the last two days I finally injected with out the auto inject, woo hoo, back to my point with the LDN, it may not be for you who knows maybe opiates effect you differently, but I am glad i did it, I see some things are still there but when i was popping 5 or 6 other pills these SX were still there too, so for me a its a cheaper trade off and a lot less carp a dm going in my system

hello everyone how yall doing fine i hope, dont ask no I didnt over do it this week lol cause I was emmm well i gots fluids in my lungs, doing my meds breathing treatments and taking it easy either it breaks in a few days or in I go I have been here so many times before so eventually if it gets real bad I shall go in. Probably why i wasnt on much i would log on and see all these words and it too much for me this week, soooooo, hopefully I can kick it like I said doing all my meds and breathing treatments roids too and plenty of fluids, i love peeing every 37 minutes:Bang-Head: lol sorry newcomers dont fret none i am harmless

happy weekend folks:hug:


peace

SallyC 10-18-2008 09:38 PM

((((((((((Frank)))))))))) You take care of yourself please. I hope you get better without having to go IN..:circlelove:


All times are GMT -5. The time now is 01:01 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.