LDN Information & Check In

Cojack · 11-12-2008, 06:27 PM

[
Hi Cherie,

not sure if i sent u a message yesterday or not/sorry/or perhaps i'm not privey on how to do it...but i live in Vancouver also and am interested in obtaining LDN up there also...if u have any leads, that would be great.

thanks,

J

lady_express_44 · 11-12-2008, 08:13 PM

Quote:

Originally Posted by Cojack

[
Hi Cherie,

not sure if i sent u a message yesterday or not/sorry/or perhaps i'm not privey on how to do it...but i live in Vancouver also and am interested in obtaining LDN up there also...if u have any leads, that would be great.

thanks,

J

I didn't get a private message from you, but maybe new people can't send send them until they've posted X number of times on the forum.

Did you get my message on the other thread?

Quote:

Originally Posted by lady_express_44

Hi Jack,

Lesions can be found in the C, T or L "section" of the cord, BUT all (larger lesions) would be noticable by having a C & T MRI, without contrast. (In adults, the L part of the cord is housed in the T area of the spine, so those lesions would be detected in a T-spine MRI).

Do you have a dx? Did they do a MRI of your spine at all? If they did find lesions there, have you been tested for Devic's Disease?

I get my LDN from my GP because when I went on it originally, the neurologists out of UBC wouldn't rx it. Now they will though, and most people attend UBC Research Center, so you should be able to get a rx from any of them there.

I use a compounding pharmacy in the valley (which I will pm you if you get a rx and want the name) because he is the most reputable and experienced in the lower mainland. I get mine in liquid form too, due to sensitivities to fillers in almost any med, so I get the PURE powder. That method is a little more fussy (needs to be refrigerated, etc.), but it works best for me.

Cherie

Once I know your history (if you have a MS dx, whether you attend the UBC research center, etc.), I can help you from there . . .

Cherie

Kitty · 11-18-2008, 05:40 AM

Just checking in to see how all my fellow-LDNers are doing?

I have felt better this last week than I have in a very long time. Energy and more energy....no dizziness....no vision problems. Not sure how long it will last but I'm gonna enjoy it while it's here!

How's everyone else doing?

marion06095 · 11-18-2008, 08:48 AM

I have been taking LDN since the end of August, and I have been doing well. My tremors remain almost nonexistent, and I continue to enjoy a noticeable improvement in my balance, coordination, and gate. I do have some leg and upper-body stiffness, but it is most likely because I am really working hard at replacing my long lost muscle mass.

Twinkletoes · 11-18-2008, 11:30 AM

Glad to hear you are doing so good, ladies!

The only positive thing for me has been stamina and possibly more clarity of thought. Which is good.

But my body is stiff and aches just like when I was on Copaxone. So I recently took my dose from 4.5 down to 3.0. I do feel less achy, but still looking forward to when my massage therapist gets back from his darn honeymoon!!!

Also, I was never dizzy until about 1 month after I began LDN -- don't know if there is a connection.

Does anyone else have issues with nasal passages and easy bleeding?

Once I get through the morning, my body usually loosens up and feels much better.

jnet1589 · 11-18-2008, 11:49 AM

Quote:

Originally Posted by Twinkletoes

Glad to hear you are doing so good, ladies!

The only positive thing for me has been stamina and possibly more clarity of thought. Which is good.

But my body is stiff and aches just like when I was on Copaxone. So I recently took my dose from 4.5 down to 3.0. I do feel less achy, but still looking forward to when my massage therapist gets back from his darn honeymoon!!!

Also, I was never dizzy until about 1 month after I began LDN -- don't know if there is a connection.

Does anyone else have issues with nasal passages and easy bleeding?

Once I get through the morning, my body usually loosens up and feels much better.

I just started LDN a couple weeks ago. Dr Skip has me doing one 1.75 then 2 1.75 because I was so tired. That helped with my energy. I have company so that's been a little hard because I don't do my normal routine and I eat a little different. I am constipated. . Next week I will be back to my routine and up to 3.5. My balance is still bad though. I still have to take my baclofen and my bladder is still bad. I am hoping that those symtons will get a little better.

lady_express_44 · 11-18-2008, 12:39 PM

I re-upped my dosage to 4.5mg last night, and I am feeling a bit more spastic today. I will keep at it for a week or so to see if I balance out . . . but our weather has been very strange this year (one day/night is warm and Indian-summerish . . . the next is freezing), so I think my body is confused.

I was supposed to have surgery yesterday, but the anesthesiologist refused to put me out unless I had a "consultation" with him, due to the MS. I've had a few operations while with MS, so I don't know what that is about.

Anyway, it's next Monday instead, so I guess my body is in for a bit more turmoil ahead. This is my first time getting surgery on LDN, so we'll see if it helps with my recovery (I haven't recovered well since MS

).

Cherie

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