Went to MS Clinic today because I'm probably switching over to there from my regular neuro because I think my neuro is retiring (I think he's retiring, his doctor diploma is dated from 1948)

So, I talked with the NP, and after that, the neuro came in. (looked this lady up, she's only been practicing since last year...she's a newbie)

While talking, I decided to ask if she's heard of it...she has, and then she got all snippy with me and said she wont Rx it. Something about it only being anecdotal....arrrrrrrrrrrrrrrrrrggggggggggggggghhh hhhhhhh!!!!!!!!!!!

So what if it's anecdotal...I've heard from enough people on here that I think it might actually work. I asked if she might ever consider Rx-ing it... Nope...not unless someone does a totally wonderful study of it to prove that it works. (craptastic...I'll never get it now)

I thought my town was fairly big that I might be able to find a doctor that might actually give me a Rx for it....nope...I feel like I'm living in a hick town, and you'd think I was asking for a prescription of marijuana or something that's felony-drug-possession the way they get all grumbly about me asking about LDN.

I'd love to find a doctor who would at least be willing to let me try LDN for a few months or something.

I'd also like to find a doctor who speaks English fluently. It's really kind of difficult sometimes trying to understand some heavy accents. Nothing against the doctors with accents and their countries of origin, it's just hard for me to follow them sometimes.

In other news from my appointment....

They drew blood from me to check some stuff. One was for (I think) liver function...not sure why they did that...

The other two blood draws they did were for a Lyme IgA and IgG, (think it's for the IgA and IgG) and a Western Blot for Lyme.

Seems they're still a bit suspicious since I had several tests for Lyme a couple of years ago that came up positive for some of the Lyme bacterias, just not enough of the Lyme bacterias for me to have a positive test for Lyme. At least the NP didnt freak out when I asked for the Western Blot (I asked for it two years ago when I was at that clinic for my 2nd opinion...and they did it for me then too) She also didnt freak when I kind of showed some of my knowledge about Lyme. The NP actually commented that I seemed to have a good understanding of MS and how exacerbations can be triggered.

Oh...and they're going to make me get an MRI (brain and spine) Argh! MRI nazi's! I tried to get out of it...mostly because I'm claustrophobic, but also because I cant afford an MRI. Silly me, I mentioned that there's a new MRI machine here in town that's more open than an open MRI. They actually had not heard of this machine before, but they said they'd be glad to shove me in that machine, and oh, by the way, the MSAA does grants that can pay for the entire MRI and they'll try to get me one of those. (crap...should have kept my mouth shut)

I really hate MRI's, and even tho this new MRI is one of the newest and most open MRI that I've heard of, I still dont want to get shoved into one. I also dont think I need a new MRI, since I've only had (according to them) one true exacerbation and one "maybe" exacerbation (both one after another) last year. I think that's mostly my claustrophobia talking.

My probably-soon-to-be-former neuro is of the opinion that you dont need MRI's every couple of years unless you've got something new and obviously horrible going on. I like the way he thinks...even if he wont give me any LDN.

Hey Erin,

Sorry you can't find anyone to Rx LDN for you.

I asked my neuro about it and after discussing it with his colleagues, he went ahead and wrote a scrip for me. His attitude was, why not? It can't hurt. I got it from a local compounding pharmacy.

I tried it for a little over a year. In my case, it did nothing for me. But that's just me. At least I had the chance to try it!

Best of luck to you.

please, if you are paying CASH for services, even an MRI ASK for a discount. Many many many places will discount the service (even if you are not in financial need) for a cash payment. My last MRI was $800 my insurer paid $114 for it. So, if they are getting pennies on the dollar from insurance companies, then a cash payment of 75% would be a blessing for them. Speak to your town hall, or local churches about financial help to pay for these medical tests. Many have neighbor helping neighbor funds to help anyone who needs it.

Have you considered a new MD? it sounds like you are not really happy with the new sheriff in town.

I told my dad about this neuro I saw yesterday. He was not impressed. He thinks, and I agree, that I should stick with a private neuro, rather than someone from the MS Clinic.

I'm supposed to go visit my regular neuro in a couple of weeks, so I'm going to ask if I'm right about thinking that he's retiring, and if he is, I'll be asking him which one of the other neuros in the office has the most experience with treating MS and if he would refer me to them.

His office is in a decent location (within 2 minutes of two yarn stores...love that!) and is a heck of a lot closer to my house than the MS Clinic.

I just dont think I need an MRI. I havent had anything interesting happen with the MS, and I just dont think I need to have an MRI just because the doctor is curious about what's going on in the inside of my head (and or spine)

I'm pretty sure that neuro is such a new neuro that she's not yet developed the concept of "bedside manner". She was a <bad word that starts with the letter "B">. I just wasnt all that impressed with her, and not totally because she wouldnt give me a Rx for LDN. It was just the attitude she had when she came into the room before the subject of LDN came up. I didnt mention that until she was about to leave the room. She just didnt give me that great of an impression.

They were insisting on me getting an MRI, so at the time, I told them to go ahead and see if the MSAA would do a grant for the MRI and see if they'd be able to do it at the new MRI place, but I'm thinking that when they call me with the information about the MRI appointment, I'll probably just tell them to use the possible grant money for the MRI for someone else who really really needs an MRI more than I do. Tell them to go scan someone who hasnt been diagnosed yet and cant afford an MRI. (she made a big deal of telling me that I would have to contact them to cancel the MRI if the grant came thru so that they could use the grant money for someone else, if I decided that I couldnt go thru with the MRI.)

I agree with my regular neuro. He told me once that MRI's are really only needed when it's obvious that something is going on. He said he would only ever make me get one if I had some new and scary symptom that indicated new inflammation. I think I'll go call him for the appointment he told me to make with him after seeing the neuro at the MS Clinic.

Erin if you really want to try LDN there are other legal ways you can get a script.

I know.

I happened to mention to my dad...the nurse...that I could get a Rx by calling a doctor in another state. He got all weird about that. Argh! (he'd be the one I'd borrow the money from to pay for the Rx)

There's a pharmacy here in town that can compound it if I can get someone to write me a Rx for it. I may try again to get it from my regular doctor. (he has several relatives that have MS, so maybe he'd be more sympathetic)

(((Erin)))..My neuro is not crazy about LDN, and believes any positive results are nothing more than a placebo effect. I told him he may be right, but the med does no harm (he agreed), and may help me to feel better. If it's the placebo effect, so be it..Bring on the placebo, as long as I feel better. I think he realized I had a pretty realistic view of what this drug may or may not do, so he wrote the rx..Maybe your doctor will do the same? Just a thought..
Whatever happens, I hope you find a doctor you really like, who will look at your health and your needs with an open mind.

Found one who will RX - out of state - don't really care what my neuro thinks - I'm sliding - tried Copaxone on his suggestion - strong suggestion - didn't do a thing except cost money and I still have lumps and bruises and I stopped in mid-Feb - nothing else has helped LDN just might !!

Sorry if this was mentioned before, but did you try calling Skip's to see if there was a doctor in your area who has prescribed LDN?

Re: all the doctors who insist that any benefits are anecdotal, it makes me wonder if they are even aware of the studies. Yes, they've been small, but they do exist!

Good luck to all of you who want to try it. I hope you're successful and that it's helpful.

I dont remember if anyone suggested that I call Skip's to find out if someone here would prescribe it. Is Skip's open on saturdays?

I did google looking for doctors who prescribe here in Nebraska. All I found was a doctor who has been doing research on LDN for women using it as some sort of a fertility drug. (LDN sounds pretty versatile, doesnt it?)