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Old 12-21-2009, 02:50 AM #441
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Originally Posted by Lady View Post
Hi Larry,
Nice to see you drop by and I am glad you are doing well. I hope you enjoyed your trip to Florida. I wish I could move to a warmer climate.
It was great, not much rain, warm weather... went into contract for a condo, took the Auto Train home from Orlando, to Lorton VA.

Quote:

I hate snow. I remember digging out our cars in your town, LOL. It was horrible. The snow trucks just plowed us back in. The roads were never cleared except the bigger ones. The individual blocks were forgotten.
and I'm home in NY now.. we just got a nice snow storm, 1-2 feet throughout the area. My area only got 8-10. I won't go out til Tuesday.

Quote:
Florida sounds good, or any place south of us. The trouble is my family loves the cold weather, so that is not going to happen.

I hope you find a nice condo to live in and enjoy the weather. Still seeing that Chiro doc in SI?
I found a good chiro .3 miles from the condo. I still go to my chiros up here as well. They got me out of a crisis last month.

Quote:

I am doing well and so glad I am on LDN. I upped it to 4.5 when I had a relapse, and it was a very mild relapse. I feel great. Thanks for our little talk. Next month I will be on LDN a year. December 15th. Whoo-whoo

Time flies when your having fun.

Take care Larry and let us know if or when you move. Be well.
I should be closing on the condo in January, won't move down til after the snow season, so not til March probably.
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Old 12-22-2009, 07:39 PM #442
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I am happy to say that I honestly believe that if it wasn't for
the LDN I would have crashed these past few months.

With the personal stress that I was under some of my ms symptoms
were really starting to act up. But, they would only last for a few days or
less. They also didn't get as bad as they would have like in the past when
things went real bad.

I had one of those drs. that didn't want to give me the LDN scrip, but
I just kept fighting for it. Thanks to this forum I found out about it. You don't see any information in any drs. office telling you about it.

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Old 12-26-2009, 12:04 AM #443
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Hi all,
Well I did a big boo boo. I lowered the LDN back to 3.0 mg when I felt better about my mild relapse. Duh! That was pretty dumb, and lame-brain of me.

My MRI was good, so good I got cocky about it and figured the 3.0 mg was just as good to keep the relapse at bay.

Boy was I wrong. I I have been getting a lot of the old MS symptoms back, which means the mild relapse went acute. Stupid, Stupid me. Now I know better.

I went to Neuro on Monday and it was confirmed that I am in a relapse from he!! again. She actually said why did you lower your dosage of LDN? She had been talking to many fellow Neuro's lately and they are prescribing LDN to their patients. She is a believer that I had really benefitted on the LDN.

So I was 18 months without a relapse, which is good for me. I usually had two a year that were the pits. So it is easy to see why I was in a mild one and figured I didn't need the 4.5 mg.

She said I should up it again to 4.5 mg and I did.. But I am to have IVSM 1000 mg for 5 days starting tomorrow, Saturday the 26th. The medicine was delivered to my house and the infusion nurse will put in the Heploc. I will do the rest for the 5 days.

Connecting and changing bandage and tapes and hooking up the drug for 5 days. They are those little pump balls of pre-mixed IVSM from the home infusion pharmacy, with little water and salt. After 3 days I will have the nurse come back and move the heploc. I don't like having it in one spot for more than 3 days. Then I will do the next two days and remove it all.

So I have learned the hard way. I was doing well, even with a mild relapse until I lowered the LDN. I should have stayed at the 4.5 that I was on. I must need that much in my body. It has stopped progression and reduced my relapse rate quite a bit.

So I will pay the piper this time and take the IVSM because my mobility is affected, and Neuro requested it to get my body back in sync with the LDN.

I hope it is okay to take LDN and steroids. Does anyone know?

I think the holidays did me in too. Why is such a beautiful holiday so stressful? I thought I had it all planned out early, but I guess MS is still unpredictable and hits when you least expect it. Thanks for listening. It may help someone someday who is in the same situation.

Merry Christmas, Happy Chanukah, and Happy New Year to all, or celebrate the Solstice. Dark to light.

I will check in to see if any one knows about steroids and LDN in the morning, but won't be back on until the steroids turn me into motor mouth, probably Sunday.

Be well and take care everyone. See you soon.
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Old 12-26-2009, 01:07 AM #444
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Sorry to hear, Lady.

Yes you can do steroids on LDN.

You are sure you have no infection going on anywhere ... right?

Cherie
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Old 12-26-2009, 12:39 PM #445
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Awwwww, darn it, Lady. My DD did the same thing...got cocky and went off LDN, thinking she didn't need it any more. She had a relapse from **** too and learned her lesson the hard way. She even cut the Prozac too. She's back on both now and back in remission..

Feel better soon, Lady.
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Old 12-26-2009, 04:00 PM #446
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I'm having an episode of ON now and I feel like it would be much, much worse if I were not taking LDN. I don't even want to try and see what it would be like without it. The pain of it is gone - only lasted four days....I'm just left with the visual sx. But.....I can still see to drive and walk around so I'll just deal with it till it's run it's course.
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Old 12-26-2009, 10:11 PM #447
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Thanks my friends.
One dose and I am motor mouth already. Hyped up for a few hours!

Nurse came late, at 7 pm EST. I had my first infusion IVSM 1000 mg. He (male nurse) put in the Heploc I did the rest. He knows I have my medical training/experience (although a bit antiquated) but I know the drill.

He was surprised I don't get the metallic taste, never did. He said I am the first in 12 years he heard of that fact. Oh well.

He took down the meds I am on. I told him about LDN. He said he would pass it on to the MS people he sees. He never heard of it. I told him to Google. He left the house with tons of info on LDN. We have to pass the word. Until there is a cure there is LDN to help us.

I have been back on 4.5 LDN since Tuesday night and feel better pain and burning wise. I never stopped taking it. I just went down to 3.0 mg when I had the Bursitis of the shoulder and the MS was doing okay, with the mild relapse, as I said on above post. BTW, the MS hug is very bad.

OM Goodness! I choked on food (esophagus spasms, then no swallowing ability) in front of my whole family and Bro's family at holiday dinner on Thursday, at Son and DIL's house. I could not get my breath.
Scared me shi!less too! Then I was fine, but with little voice volume.

They all looked at me like I was having a heart attack and poking each other. Glad it wasn't an emergency, they just sat and watched me trying to get some air in and wheezing. My DH knew, then explained, "Let her be for now." I was sooo embarrassed too.

This worsens with an acute relapse, but I had to see my family. Sick at home or sick with family and Grandkids, I choose my family. I needed them. Pity party was over, but the presents helped. and I didn't cook. Wobbly and weak.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Cherie thank you. I thought I had read Steroids are okay with LDN, but I am glad you confirmed it. I think I would take it anyway. I indeed learned a lessen, alas, the hard way.

I had my PCP test for UTI since I was having urgency, frequency and retention. Negative and the culture too. No other infection noted, (knock on real wood).

Just the Bursitis from overuse injury, which is inflammation of the Bursa sac. Once that darn inflammation gets in the body, all he!! breaks loose and autoimmunity kicks in, attacking the whole body with MS, that's my theory on why I went acute besides lowering the LDN that was preventing this from getting worse.

Kitty, I am sorry to hear you had an attack of O.N. I have had a few in the past. This relapse brought me a new symptom Vertigo. Oh the fun, NOT! I hope it goes completely away for you. Prayers and hugs to you.

Kitty many MS centers where I live are now prescribing LDN. That's why my Neuro said up the dosage again to 4.5 mg. She was very conservative before. Not now.

Sally, my middle Son and DIL, who live in Ohio sent me an Official Ohio University sweat shirt. I am a team player now. and other nice presents too.

Jappy, don't stop the LDN. I am on it one year now and very happy with the results. We still can get other things that happen, but many improvements did occur. Glad you finally got the LDN.

Hi Florida Larry. Hi everyone else. Be well and take care all.

Thanks again for listening. Disclaimer: I am not responsible for any typo's or use of wrong words, times and dates. I have major brain fog with this attack.
Hugs to all..
Motor Mouth is tired.
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Old 12-27-2009, 11:54 AM #448
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(((((((((((((LADY))))))))))))))
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Last edited by SallyC; 12-27-2009 at 12:24 PM.
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Old 01-07-2010, 12:31 PM #449
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I went yesterday to the pharmacy to pick up my scrip of LDN

The pharmicist was telling me that there are a few more people that
are now using this that have MS.

He said he has been checking into LDN on the internet and is so
surprized and happy to see how much it is helping in different diseases

He also said that LDN is being used on people that have LUPUS and
it is showing a positive effect.

We also talked how drug companies don't want to hear this because
there is no grrrreat profit for them. They cannot PATENT it because it is
already out there. POOOOR COMPANIES. Terrible when MONEY is more
important then the lives of people.

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Old 01-07-2010, 05:51 PM #450
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Jappy, that is so true. It helps us, but it is pretty cheap compared to the other drugs.

I had upped mine with the relapse but now went back down to 3.0. I might have to stop it next week because I am having a Colonoscopy and the Gastro doctor will by sedating me (out like a light) so I will taper down until the test and start up again right after the test.

We have to play with this drug to our own needs. I am glad it is so versatile that we can do this. 4.5 might be too much for me. I will play with the dosage after I have the test.

I am not looking forward to the prep work for the test, but what's a girl to do? The LDN has helped my other autoimmune colon disorder so I am sure the test will be okay. They just like to keep tabs of it.

For me it seems like a pain in the buttski to have the test when just out of relapse. But it is scheduled already and approved by medical ins.

I'll just nod-out and brave it.

Check-in how is everyone else doing?
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