Just got back from my neuro
 

He told me that I dont need to get a new MRI like the MS Clinic is trying to push me into doing. Said that they're kind of MRI "nazi's" and that they like scanning everyone a couple of times a year. I told him that I cant afford even one MRI, and didnt care for the doctor I talked to at all. (oh, and there's the whole claustrophobia thing that really keeps me from wanting to do the MRI even if I could afford it.)

I asked to make sure he's not going to retire (he said he'll work till he's dead) and then told him I'm sticking with him or one of the other neuros in his office if he's not available. He was fine with that.

So, when the MS Clinic calls to tell me whether or not they got a grant from the MSAA for an MRI, I'm going to tell them if they got a grant, to give it to someone else who really needs an MRI, and that I'm not going to be using their neuros. I'm sticking with the one I have.

He said that so far I'm fine, and he thinks all the problems that I've had that the MS Clinic is calling exacerbations are really just pseudo-exacerbations, since it seems like we can connect all the dental problems to the flares. (and maybe one cold)

He said I just have to get the dental stuff dealt with (doing that tomorrow. yay!) and that the few flares I've been having should resolve in a bit.

He also told me that he did a short study on LDN back about 15yrs ago. (he didnt remember doing it, but I guess he was looking it up in his old records and found it) He didnt think there was anything to LDN, but said that if I really wanted it, that if I can find another doctor to give me a Rx, he said more power to me. He wont Rx it, but doesnt mind if I get it from someone else. (yay!)

What I dont understand is that he doesnt think that any of the CRABs do anything for MS either, but he still Rx-ed the Copaxone to me...but he wont give me LDN? That makes my head hurt.

Still, I like him better than the doctor down at the MS Clinic. So, I'll stick with him, and I guess I'll go searching to see if I can find someone to give me a Rx for LDN.

Some neuro's don't like to rx LDN because it isn't a mainstream med. Copaxone is though ...

Glad you get to stick with him, cause you really like him.

Cherie

Glad your appt. went so well, Erin and that your neuros not retiring and that you really like him. That means a lot! I like mine too ,but he's just not available enough for me to feel comfortable lately. ( Mine is pretty much partially retired, isn't in a lot. So, when he is in, he's quite busy. He wouldn't admit to the partially retiring bit even though, I have inside sources and my experiences with calling in for new scripts, new problems, etc. prove otherwise lol) I'm thinking of trying one of the other MS Specialists in the practice after my next visit.

An alternative to LDN?
 

Erin,

I am a member of the Neurotalk Parkinson's forum. I offer the following information regardiing my experience concerning LDN in case others on this forum might be interested in exploring a possible alternative which does not require a physician's prescription.

Another member of the Parkinson's forum, AshleyK, reported that she was using LDN to attempt to ameliorate the progression of Parkinson's symptoms, since she had read on the LDN web page that some people were using it for that purpose, with positive results. She reported that LDN has apparently been effective in slowing her symptom progression.

A couple of years after I was diagnosed in 2001 at age 63, I did some literature research about naltrexone and related morphinan drugs. I discovered that Dr. J. S. Hong, a neuro-pharmacolagy scientist at the National Institutes of Environmental Health in North Carolina, who was studying inflammation in nervous tissues, discovered that, in addition to naltrexone at very low concentrations, dextromethorphan, a drug that is available over the counter in cough preparations, at the same low concentrations as naltrexone, was equally effective in suppressing inflammation in brain tissue cell cultures.

Because I wanted to try the LDN type of approach, but was reluctant to ask my neurologist to prescribe LDN, I decided to try low-dose dextromethorphan (LDDM) to slow my Parkinson's progression. In addition to my typical daily Parkinson's medications, I have been taking LDDM (1/2 tsp. of "Pedia Care Cough" containing 7.5 mg DM per tsp.,) every night for the past 6 years. The dosages of this pediatric preparation recommended for cough supression in children is 10-20 times higher that that.
During that time my symptom progression has been very slow, compared to that of other Parkinson's patients at comparable times after diagnosis.
Several other Parkinson's patients at early stages of the disease have also begun LDDM with good results. I have since shared my use of dextromethorphan with my neurologist, who continues to be delighted with my lack of significant progression.

I do not know whether or not dextromethorphan might be effective in modifying the progression of MS, but am aware that neuroinflammation is common to the progression of several neurodegenerative diseases including both MS and Parkinson's disease.

Although I am a scientist, trained in biochemistry and molecular biology, I am not a physician, and I want to be clear that I do not share this information as a recommendation for anyone else. It is only a case of self-experimentation which I have found safe and apparently effective in my own case.

Robert

Erin, did you ever call Skip's to see if they could recommend a doctor in your area who will prescribe?

Robert, I have read several of your posts over in the Parkinson's forum. A lot of what you address re: PD has come up in my research about MS.

No, I hadnt called them yet. Was waiting to see what the neuro said. I'll probably call them soon.

Would it be safe to assume that LDN and LDDM taken together would be a safe combo? I get spasticity if I take the largest recommended dosage of LDN so I have reduced mine to 3.0 mg each night. I wonder if I took that and the LDDM together I'd get a double benefit?

LDN plus LDDM?
 

I would be hesitant to take both drugs at the same time since both are presumably interacting with the same receptors, and it is my understanding that the very low dose is critical for the effect. By taking both, one would probably be essentially doubling the concentration of drug, possibly defeating the "low dose" effect.
Robert

RLS, could you link us to information about this drug & MS on the internet? I've run into a fair bit about how it may be helpful for depression/emotional lability, but not much in the way of how it might be helpful for progression, or any anecdotal reports in that regard.

Thanks, Cherie