disappointed but not stopped
 

Took my mum to my GP yesterday who said that she didn't feel comfortable prescribing a drug (LDN) that my mum's own neurologist wouldn't prescribe. This makes sense, and maybe I shouldn't have told my GP that Dr. T wouldn't prescribe it, but I gotta be above board on all of this stuff. Then I asked my GP if my mum could get a referral to a neurologist that I understand prescribes LDN.

After this appointment, I immediately dragged my mum over to see this Dr. D yesterday, as I had an appointment myself, and my mum's referral to Dr. D was faxed-in while we were in the examining room. Good timing.

Dr. D will NOT prescribe LDN for my mum though.... Frustrating, yes, BUT she did say that she'd "advise" the GP on HOW to prescribe LDN. Dr. D also added that of the 50 patients she has put on LDN over the past few years, only ONE person has stayed on the drug. Hmmmm.... Based on what I'm reading here, I find this statistic rather confusing.

So, yeah, this circuitous route might take a bit longer, but we are making some headway. Slow headway, yes, but headway nonetheless.

Will let you know what happens if/when my mum starts the LDN.

One last thing: any advice on liquid LDN vs. pill form?

Thanks -- and take care

TL

thanks!

Yeah, Sally, I hope everything is okay with him, I was concerned when they said that he'd have to call off all appointments indefinitely. I was eager to hear from "the man" about LDN and ask him all the questions I had, but the main issue is that I 've got it on the way.

Dr. Bihari
 

Hello

Where is "the man" located?
Maybe I should take my mum to see him, if and when he returns to his practice....

Thanks

TL

New York City.

the MAN
 

oh dear...that's a bit far from Vancouver....

Thanks for letting me know, though.

TL

Hi TL and welcome!

I hope you get LDN for your Mum. Doctors say all sorts of things to try to get you to use other meds, but if you are persistent you will get the medication for your Mum to try. Good Luck to you both.:)

Hi PL,
Good news indeed.:)
I am glad you got the script called in and will be starting LDN soon. What dosage are you starting on? Let us know how you feel.

I noticed more energy at first and then I felt better and better and didn't notice it until I looked back, to where I was before trying LDN. I could see so many of my problems had gone away. It is subtle at first, but greater in the long run.

Kitty, Happy one year Anniversary on LDN. :hug: Good for you girl!


.

Cherie, the progression (of numbness) has been slow and steady for the past year. I don't think I have an infection, but how do you know for sure? Do they draw a blood sample or what?

When I got dxd in 2007, the only lesion was a marble-sized one on my cervical spine.

I just don't know about starting up Copaxone or any of the DMDs. I lack confidence in their ability to actually halt/slow progression. I just wish there were more clear answers.

I was all ready to make an appt. with a neuro for an MRI, then I had a conversation with an MSer who said she hadn't had one in 30 years! :eek: So I don't know if I really need one. So confewzed. :confused:

Hi Twink,

That is the problem, you don't even know if you would be worse if you stopped the LDN. It is a crapola shoot no matter what. The DMD's don't promise stopping progression or disability, just relapses mostly.

True relapse can cause more disability, but then MS is always active in our bodies. It may not be inflamed or attacking , but it is there hiding out all the time.

They are doing some studies now on a different "C". I think it has less site reactions, like maybe 1/2 the filler dose, but same main drug. It should end in November I think.

If it works better, than at least if you add it to the LDN, and you won't have those itchy bumps or site pain.

They changed something, and now maybe it is going to be changed back with all the complaints. It was 7 days allowed out at room temperature, then they changed something, and all of a sudden it is allowed at room temperature for 30 days. Hmm

Maybe that's a thought for you Twink. I hope you feel better. Is the heat getting to you?

Hi: I have a question that I am sure someone will be able to
answer.

Yesterday I went to see the Neuro (reg. appt.) I had his NP
instead of him.

I told her I quit Rebif and why. Then asked her about putting
me on LDN. She said she would have to ask the dr. about it. That's when
I said I have talked to him and he said "Noo".

She said she would talk to him and tell him what has happened since
i took Rebif and that I want to try and insisted on LDN

She came back and said he finally said YES he will prescribe it since
I am pushing and don't really understand that it will do nothing for me.

The problem now seems she said "that it only comes in 50mg and it
is going to be hard to find a Pharmacists to decrease it to the mgs. that
I should be taking. She will check with the hospital pharmacy and see if
they are willing to make the change."

Is she just giving me a lot of BS that it is hard to find a pharmacy to
fill the scrip? I haven't heard from her yet. Maybe this is still the drs. way
of me not using LDN.

SalPal i know you are very informed about LDN, I hope you or someone
has an answer.

Jappy :confused::confused:

Jappy, have your Doc or NP fax the script to Skips ( I think I gave you their fax no, and then you call them and set up a paymnt/mail schedule with Skips.

Tell your Neuro that Skips uses pure naltrexone powder with a filler and can make up any mg amt you need. I suggest you start with 3mg and see how that goes. I was on 3 for a long while before upping mine to 4.5 mg

Some peeps who are very med sensitive sometimes start with 1.5 mg for a month and then go to 3mg. Skip can split it into 1.5 mg doseages, if that's what you want to do.

Good Luck and much love..:hug: