I just got back from my appointment with the MD. I basically wasted $375 and almost cried entire way home. Not only did I not learn ANYTHING, but when I inquired how many MS patients he has prescribed LDN to he REFUSED to answer. He told me "I am not going to answer that question". I asked for a very rough guesstimate, not exact number of course, just so I could get a better idea as to how accurate his thoughts are and experience with LDN.

He provided me with answers to NOTHING!!! I learned nothing at all and sick to my stomach I lost all that money which I really could not afford right now. I see that is it more crucial than ever that I find a neuro who is a fan of LDN, because this did not work out. Unfortunately, I don't think I will EVER find a neruo who thinks going off MS drugs and only using LDN is a good idea. This is now making me feel stupid and foolish for using only LDN? I just don't know

I am so upset I can barely type that I lost $375. In conclusion, I at least got a one year prescription of 4.5mg LDN. That's it. I could have gone elsewhere MUCH cheaper than him to get that! The visit did not go as expected. I am really bummed about this.

All I can do now is take MRI in 6 months and hope for the best. If I have new lesions, I will be forced to go back MS drugs unfortunately.

at least you've managed to get a Rx for LDN. I've tried, and not been able to get it.

I am just sickened by how the world works. LDN would totally have been an "MS drug" if it weren't generic,was patentable and wasn't dirt cheap to buy and big pharmas could make $$$ off it!

... and neuros who refuse to prescibe it are in the same category!!! It's always about money. I will never go back to the neuro who wouldn't prescribe it. He ain't getting my money!

Erin524... I've found so many MDs that do prescribe it that it's crazy. There are a ton out there. In my area alone, I found almost half a dozen. I just sent you a PM to a contact I have who can help.

Although you will hear anecdotal stories about LDN helping with MS there is not enough information to say it would "totally be an MS drug" if it was patentable. That just isn't accurate and would be misleading for new people reading this board.

I wonder how much of your frustration is that you are not getting the answers you want. You don't want to be on a FDA approved medication for MS and therefore you may need to accept that you will likely disagree with most neurologists.

If you present to the office with such a hostile underlying attitude my guess is it will be picked up on and you will continue to have difficulty communicating with them.

I barely did any talking. The gentleman who accompanied me (friend of mine) is a rather intelligent Harvard 76 MBA (PhD) who did the majority of communication on my behalf. Please don't assume that I was "hostile" because that is certainly not the case. I was actually very polite and didn't show the slightest frustration (unlike on this forum of course!) If you had been there, you would have clearly seen why I was disappointed as was the person who joined me.

Let me correct you, I had ONE question I asked him being how many (rough guesstimate) MS patients has he prescribed LDN to!!!! I stand by what I said in my prior post.

PS: This is the same neuro who told me to stay on tecfidera even after it gave me LEUKOPENIA> This is very serious.

EDIT: Wish I had spent more time looking at more reviews of the MD I saw today.

Sorry that you had a negative experience Lilly, but please do keep looking for a neuro that will support you. They are out there but it does seem that there are also some who can be abrupt when we least can handle that.
You might also try to see if there is an MS support group in your area. Someone there might know of a neuro near to you that they have had good experiences with, and is affordable.
Breathe.

With love, Erika

I am in the secondary progressive stage of the disease and for me, it is a welcome relief from those awful relapses of RR. Just like everybody else, I have to fight every day to keep what functionality I have, but in the progressive stage it seems to me to be more of a fair fight.

In RR, you can be doing your best with your exercises and physical therapy to help yourself. But then you have an exacerbation, and it knocks you right off your feet. It sort of feels like every relapse is a real sucker punch. Boom! Just like that, you are sidelined.

But in the progressive stage the relapses for me have been much more subtle, and go away faster than before. For me it is an improvement in the quality of my life.

I hope I have been of some help.

I asked my neuro today.

He said about 60-70% of people will develop the secondary one. BUT its different for each person.

I can imagine... I have very noticeable symptoms (to me only, sensory stuff) that never go into remission now. I wonder if some day down the road (not far down for that matter) I'll be re-classified.

This according to the NMSS

Prior to the availability of the approved disease-modifying therapies, studies indicated that 50 percent of those diagnosed with relapsing-remitting MS (RRMS) would transition to secondary-progressive MS (SPMS) within 10 years, and 90 percent would transition within 25 years.

While MS experts agree that the medications have an impact on disease progression, it is too soon to tell the extent to which the disease-modifying treatments alter or delay the transition to SPMS.