Oh crumb!
My supply of LDN is running low so I put in a call to the MS clinic and left a message on their voice mail asking to have my neuro renew it for another year. They called back to say that my PCP can renew it.

I told the receptionist that I had asked him to do that the last time I was running low but that he had refused, saying that he "was not comfortable doing so because he didn't know anything about using it off label like that."
She said that she would call the neuro and would get back to me after she spoke with him.

The next day she called to say that he would renew it for a month but that he wanted to see me before renewing it for the coming year. I have an appointment at the end of October.

Sheesh...what a hassle it is just to contact him; never mind asking for something specific like a script renewal. The above sort of phone messages and return calls is typical and typically takes place over the period of several days; as it did this time around.

I hope that the upcoming appointment doesn't mean I will be put through another battery of tests (MRI, evoked potentials, Cognitive tests, Conduction studies, blood work etc.) like the last time.

After the last round of all of that, the neuro said that my MS had gone from RRMS to SPMS; and that there wasn't much treatment available other than some trials he had going with off label use of drugs. I declined to do that and I got the impression that he more or less dismissed me from his care (didn't want to book me for a follow up.) Now he wants to see me again?

Along with the whole day that seeing him involves (the drive alone is 90 minutes one way), plus the usual round of visits to the PT, OT, MS nurse at the MS Clinic, I really don't want to go through all of that testing again only to hear how things have progressed according to the test results.
I already know that without the tests.

I wish that he would just renew the LDN.
Do others go through this to have the LDN script renewed?

Yes, I know that this not the thread to go off on a rant...but it didn't deserve a separate thread.
I feel much better now :D.

With love, Erika

I have a phone appointment in October to start LDN again! :)

I know it isn't a cure but I do feel so much better when I'm on LDN. Can't wait to get it and begin taking it again.

I have an appt with the same Doc, on the 7th of Oct.:D

That's my appt date, too!!! 1:45 PM. We'll have to ask Dr. S if he's knows we're friends! No wait......that might scare him!!! :D

LOL! Mines at 1:00. I'm going to mention it, so he may say
something to you.:D

So is mine! 1:00...but on the 30th.
Weird.

With love, Erika

Yey! Just got a phone call from the MS Clinic nurse that my neuro has renewed my LDN for a month. That will carry me through until I see him at the end of the month. What a relief!

With love, Erika

Hi all!
Figured I would drop in with my LDN update. Well it has been 5years and 2 months since I started LDN and still nothing major (just old Sx showing up if I get over heated) I have been really stable, my neuro still has no faith in my choice, She still says "there is no proof it works." I tell her "I am proof" ;) Anyway I just wanted to drop in and give an update, I know I don't visit as much as I should, but when I am feel good I don't really sit in front of the computer much.

Hope everyone is doing well, And I will catch up with everyone soon since I don't want to go outside in these sub zero temps.:eek:

Hi PunkDizzle! Good to see you here. I see you still have the cute little head banger smilie! :)

HAHA! Yup, I love that little guy, though I don't head bang as much as I use to since it makes me a little dizzy these days. :D