NeuroTalk Support Groups - LDN Information & Check In

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That’s wonderful! I hope you have good luck with it. I am really enjoying feeling so much better.

Quote:

Originally Posted by herekitty1960 (Post 369396)

Thanks, Cherie. I've been taking Benedryl but it only seems to make me sleepy...doesn't really help the sinus troubles. I'm thinking it might be allergies and not an infection because we are under a ragweed/pollen alert here. Seems they are out in full force right now. I think I will make an appointment with the doctor anyway just to be on the safe side.

Can I ask you a question? How did you know that 4.5 was too much for you? What sx did you have? Once you went back to the lower dose were you okay and did you stay at that dose? Guess that was three questions....oops :o.

Thanks!

You know what, Kelly? . . . allergies are another thing that actually cause symptoms for me, but I only made that connection this summer. When I had the neurological pinpoint "itchies" during the heat, and when I had the burning in my legs from changing my laundry detergent, I just thought it was break-through symptoms. It wasn't at all like an "attack" because the feelings were intermittent with sometimes several hours or days between them.

HiCY Chris mentioned antihistimines (ie. Benadryl, he uses one that starts with a "Z" though) for the itchies, and I couldn't believe it worked. I did some research and found out antihistimines sometimes work for neurological symptoms too. I have since tried Benadryl for the burning in my legs (feels like a blow-torch on them), and I have now washed everything with good-old Tide, and I am barely ever getting the burning any more. When I do though, Benadryl works for me! Here's a thread about that:

http://neurotalk.psychcentral.com/thread53798.html

So, it may be that you have to find the allergy med that works for you.

If it is an underlying sinus problem (for whatever reason), it's very possible you have an infection, and sinus infections can be extremely stubborn and deep. I went through that for about 15 yrs, until they did an operation where they opened me up and discovered I was riddled with polyps in my sinus cavities of my cheeks. This was mostly the pre-MS-dx days, but I lived on antibiotics for most of that 15 yrs (on and off), before they eventually noticed one polyp dangling in the back of my throat. That's what prompted the surgery... I haven't had a sinus problem or infection in over 10 yrs now.

When I originally went up to 4.5mg, and also when the weather changes every year, the spasticity pain in my legs (and often arms) gets quite bad. That was one symptom that was very debilitating for me, on a daily and long-term basis, pre-LDN. It feels like my tendons were being pulled to the max. When that starts acting up now, usually at the end of Sept/beginning of Oct (depending on the weather), I have to go back down on the LDN to about 3.75 mg. I am always back up, with just one increase in dosage to 4.5mg, within about 3 weeks though, and the problem is gone when I do.

Cherie

Quote:

Originally Posted by marion06095 (Post 370351)

Ut oh!

Right on the heels of my poison ivy incident, I have huge hives all over my body. When my PCP asked me if I was taking any new drugs, my heart sank. I told her about the LDN. I also told her how well I am doing on it, and how much it has helped me, so she didn’t say to stop taking it. I now have a new ten-day tapering course of Prednisone. I don’t think it is the LDN that is causing the hives because I was taking it for three weeks before I got them. I really hope that the hives are a result of my body still being upset about the poison ivy. When I got home, I Googled the word hives
, and I found out that twenty percent of all people will have a bad case of hives in their lifetime, and that in most instances the patient never finds out what caused them.

So now I am a scratchin’ and a hopein’.

Marion, is it possible you are allergic to the filler Skip is using. I have lots of allergies, even to fillers, so that's why I use the pure Naltrexone powder compounded in distilled water.

It may be something else entirely too (the season; mold, etc.), but if it doesn't clear up, I'd start testing my options.

Cherie

Quote:

Originally Posted by PunkDizzle (Post 370420)

finally found a Dr that will give me a Rx for LDN!

my shrink.. lol

:ROTFLMAO: That's funny, PunkD!!

I'm happy you are getting a chance to give it a go!! :Dancing-Chilli:

So, unless you have been following this thread all along, you are going to have to go back to about page 5 to find out what side-effects MAY occur, and what NOT to be concerned about. (Well, hopefully not back to page 5, but probably when Twinkletoes, Kelly, and Frank started...).

GOOD LUCK!!! I hope it is your ticket!

BTW, I am also a person that doesn't do well with meds, and I have done very well with this one. :)

Cherie

Hey Twinkletoes . . . I hope your "absence" from this thread means you are doing well and having lots of fun away from here!!

;)

Awwww, thanks for missing me, Cherie!

I've been busy and doing some traveling. Writing this from sunny Phoenix. Had to come visit the grandkids. ;)

The vertigo is still with me, but Skip's Pharmacy said it wasn't likely the LDN. Guess it was just a coinkidink.

Haha Drew! Whatever it takes -- glad you got the prescription!

hello everyone still doing well on the LDN, some days better, but am doing still as good and better than I was when on the other PILLS,

could the hives be a new soap or laundry soap or fabric softner?, just a thought we have to be careful here one kid and wife have troubles,

glad you got your script, and glad its working marion,

howdyCherie, Twink, Kelly and our missed buddy Sally, hope you all have a great weekend

<< BIG bright smile >>

I had my thirty-day telephone consult with my LDN doctor yesterday. He and I seem to communicate quite well, and he gives me that nice, warm, fuzzy feeling you get when you have a doctor with whom you are on the same page. He is upping my LDN dosage to 4.5mg. That’ll start Monday night.

I have to admit that I have been holding out on you all a little bit. The reason for this is that I don’t want to be the source of misinformation, and to me that means that I will not report improvements that might in my mind be transient. As I mentioned before, my hand and body tremors have nearly disappeared altogether. I can further report that my walking has improved tremendously. My husband tells me that I no longer walk like a sick person. I can feel it myself, too. I am very tall (6’ without shoes), and when I was well, I am told I carried myself quite gracefully. I can feel that ease of movement returning. It’s almost like little parts of me (my handwriting, the way I normally carry myself) that had gone away are reemerging. This pleases me more than I can tell you. If things keep going as well as they are now, I’m going to have to resign from the LDN Skeptic’s Club.

That is so encouraging to hear, Marion. I've experienced the same thing with my sx and I know how you feel...you don't want to say anything too soon for fear of jinxing things! But the difference I feel is just like night and day. It's so wonderful to have my energy back. Not to have to worry that if I miss my nap I might conk out during dinner!! It's just so nice to feel like myself again. I was beginning to wonder if I ever would.

I'm so happy you're have a positive experience with it. :)

Hi Kelly, Marion, and Frank. :Wave-Hello:

I too was afraid to speak up at first, because I was waiting for the other shoe to drop. I got over that after about 6 months . . . :D

And, there have been times that were slightly worse because of excess stress, infections, or having to move 13 TONS of furniture.

After a while though, any time things were a little more difficult for me, I just remembered back to what it was like before I started . . . and I took stock on where I am "now"; 1, 2, 3 yrs down the track. I am STILL at exactly the same EDSS I was at 9 months after starting on LDN (where I had improved by one point over the prior two yrs), and I struggle much less with the symptoms then I did back then too.

It's not a "cure", or a perfect drug . . . but I am very thankful (in EVERY way!) that I got on it . . . at least until something better comes along.

Cherie

ahh more good news for me! we have a compounding place in my area.. and they do use the pure powder form of naltrexone no crushed 50mg pills.. they said they do have it quality tested.. and have quite a few ppl that they fill for.. so i am quite happy..

i am not a big fan of getting my meds through the mail.. the only issue is the filler is lactose.. and that can go either way for me... i wouldn't say i am lactose intolerant.. i can eat cheese and drink milk.. but i can not by any means have ice cream or its me in the bathroom for a few hours with cramps and well ya know... they did say they could use another filler... but i said go ahead with the lactose this time since i know what it does to me..
because with my luck they would find a filler i am allergic to..:rolleyes:

anyway that is my sad little update.. so until i have the pills in my hand (they said Tuesday) i really wont have any updates that are worth mentioning..