Hi Lilly,
As we all know having MS sucks and can be terrifying however it seems as if you are particularly frantic with multiple complaints and issues with physicians, diagnostics, medications and carcinogens in the drug and food supply. I'm confused as to why you have been on so many therapies including Tysabri if you were having zero problems over the past decade.

Just in general FWIW there are cut off values to consider with regard to ANC counts and neutropenia so there are times when risk vs. benefit is considered and less than perfect lab values might be appropriate, it doesn't necessarily mean a physician is irresponsible.

Sadly MS is a progressive disease and, as I think Richard Cohen so eloquently said,

Progressive Diseases Progress.

My best advice would be to plan for an uncertain future now while you still feel good and are able to work. I was diagnosed 10 years ago with "multiple" lesions on MRI and that scared the pants off me also. The good news is I have spent the past decade working like a dog, paid off two of our houses and have contributed generously to my retirement account. Having MS can only be worse if finances are strained, imo.

Best of luck to you and us all. Like was said it is a crap shoot.

I had an MRI 2006, but the next MRI was done not until 2012... so many years went by in between! The MRI I had in 2012 (if you saw my attached results in prior post) showed tremendous progression. I went to see 3 top neuros and they all said they were surprised (that I was so asymptomatic) and at how much my MS progressed based on my MRI scans and that I needed to get on tysabri or gilenya (tecfidera hadn't been approved yet) ASAP regardless of whether I was asymptomatic or else I was headed for serious trouble. I was also in a state of shock at what the MRI revealed. I couldn't believe how much my MS had progressed, because again, as noted numerous times now... I had no symptoms during those years. Since I'm not that foolish, I of course went on an MS drug! It was urgent situation. If I had to do it all over again I still would have gone on tysabri for ONLY one year (JC+) as it stopped all the numerous active lesions I had. Unfortunately, I didn't learn about LDN until recently.

Anyways enough of that. I just took 3mg of LDN and hitting the hay now. I will just keep fingers crossed LDN will work so I don't have to go back on tecfidera drug which will NO DOUBT increase my cancer risk!

It is not only MS drugs that are loaded with carcinogens. Check out "foodbabe" founded by Vani Hari (real eye opener). It is disgusting what corporations (MONSANTO with their GMOs!) and big food companies will place into and do to your food (especially in America!.. using chemicals BANNED in other countries). It is no wonder why diseases and cancers are on the rise. Which is why I never eat processed foods anymore... only all organic veges, fruits, nuts and seeds (vegan). Started eating this way 4 months ago and I wish I had started sooner. I really Love it!

Lilly ,

Dealing with MS is very much a trial and error sort of a thing. What works for some, might not for others. Along those lines, some folks find that their MS symptoms and progression potential respond well to diet changes, nutrient supplements & supports, certain medications, life-style etc...while other folks find that their MS does not.

Add to that the fact that many people with MS, also have been diagnosed with other conditions that mirror or amplify MS symptoms, and it can be very difficult to be certain that a particular tactic is responsible for improvement, remission or stalling of progression. That's one of the things that makes dealing with MS so frustrating. Another is that for a while, something may seem to work, then mysteriously stops working or begins to cause nasty side effects.

I fall into the multiple diagnosis group and have pretty much resorted to symptom control.
To that end, in the medication department, along with LDN, I take Baclofen for spasticity, Ibuprofen for pain & inflammation, Modafinal to combat narcoleptic fatigue and more recently received IVIG for a persistent human parvo infection that causes inflammation in my joints. I take what I need in the minimum amount that will allow the body to move and function.
Doing so doesn't eliminate the symptoms, but helps to make them bearable.

I wish you well with the LDN.

With love, Erika

Thanks again for replies.

I took 3mg of LDN last night and I'm happy to report I had NO reaction to it whatsoever (it felt like I took nothing!). It is actually refreshing to not have a bad reaction to something because I'm so used to having a toxic reaction (horrid flushing on my entire body, burning skin, itching, runny nose etc) to tecfidera pretty much every single time I took it. IMO that stuff is poison! Avonex and tysabri never gave me any reaction either. Avonex didn't work and I'm JC+ however, so those are off the list.

Anyone here familiar or look into the Dr Roy Swank (amazing neuro I wish he were still alive) or Dr John McDougall diet? Dr Mc Dougall recently conducted a study which resembled Dr Swank's. I recently corresponded with him and the results of the study have not been published yet but he had the same results as Dr Roy swanks which CLEARLY showed people who remained on the diet basically halted their progression! However, there is a definite rather huge impact of diet in relation to MS. I am actually on the Dr McDougall diet and even if I didn't have MS I would still be on it just for health reasons. especially, since there is hereditary heart disease which runs in my family... even though everyone in my family is super skinny!

Everyone does what they feel is best for them.

Some of us have really excellent insurance and can try all the meds that are approved for MS. Some of us don't and it's a little more of a challenge. Some of us try the naturopathic way of treating any disease we may have. It works for some but not all.

Everyone of us have a unique body chemistry and what may work wonders for one may not work at all for another.

We're here to offer support for whatever path you choose to take regarding your MS.

At this point in my personal (and unique) journey I think I am "middle of the road". Several years ago when I was able to afford the MS dmds I tried several. Wasn't able to tolerate the Interferons or Copaxone. Some folks are.....and I hope they continue to tolerate them well. They can help halt progressions in lots of people.

I got all gung-ho about diet and nutrition. Found out just how expensive it is to eat totally organic!! Also did alot of research and learned which foods are best, regardless of health issues, and tweaked my diet to include them.

I did become vegetarian and would be vegetarian even if I didn't have MS. It's not for everyone but I've found that no meat means less inflammation for me. Plus, I just feel better.

Whatever works for any individual is what they should be concentrating on. Just because someone eats stuff that I don't (or can't) doesn't mean that they are not diligent with their healthcare or choices. We all have to take care of ourselves however it works best for us. It's all individual. But we all just need to know that whatever we choose we can come here and talk about it in a safe and non-judgmental environment. I love you all!!

I'm seeing the new MD tomorrow. Curious as to what he's going to say regarding LDN and bla bla. I'm paying a whooping $375 for the visit (not happy about that because I'm poor right now! they don't accept insurance)... but the follow up visits are free for entire year. They also told me he's going to spend entire hour with me and is very thorough... guess we'll see about that!

I took 3mg of LDN again last night. I'm not having even the slightest side effect to LDN (did not affect my sleep at all, nothing) which is great! I bet you he's going to increase dosage to 4.5mg.

I'll update you guys on what this MD says (who used to be a radiologist which is perfect). I don't recall if I'm allowed to post the doctor's name and website in this thread? He's got info about LDN on his site etc. I post in a lot of forums, so difficult to keep track!

All I can say is I'm going to be super nervous to see what my MRI results are in 6 months.

lily,
go with your Q's written down. try not to be a demanding pt but one who's a good advocate and asks for his help. stay calm.

are you bringing anyone with you for a 2nd set of ears?

i'll be anxiously waiting to hear how the appt goes. try to get what you're paying for. good luck.

I just called someone who said they are going to try to join me during the appointment. I was going to go by myself, but after reading what you wrote I think it probably is a good idea to have second pair of eyes. Thank for the idea

I will probably start crying when I have to hand them my credit card, the visit is sooooo expensive and I really can't afford it right now... but I really need to find an MD who is knowledgable about LDN, dosing etc, so have no choice because I cannot (noway in heck) go back to the other MD I saw who already informed me he would NOT increase dose from 1.5mg and was not a friendly guy at all.

PS: It is funny you say "stay calm" because I hear that from people all the time. I tend to get really anxious in certain situations, so will try to chill out.

Lilly, I have been on the Swank diet for over 25 years. I was a patient of Dr. Swank. I had already been dx'd with MS, but went to him because he was only 150 miles from me and I thought he must be wonderful to have discovered the diet. He tested my blood for MS, the way he usually did, and said I had it (he did not discount other tests). He WAS wonderful. He had further ideas about what caused MS (something lacking in the blood) but he couldn't get together enough funds to continue that research...he took my blood to include in the research, a lot of which was done in England.
I still follow the diet but I do eat more eggs than he suggested. I should cut back perhaps.
I am getting more symptoms now (occasional imbalance) but I'm old and have two other diseases. Like Erika, I am a person with multiple diseases. Big change from my pre-age-50 condition of having NO diagnosis for thirty years of symptoms. My Porphyria makes it impossible for me to take most MS drugs or any Polycythemia Vera drugs, so I have had radiation for the PV twice, and may again (to cut back platelets and red cells). I don't want the radiation, even though it has no side effects, because it IS radiation, but I may have to do it. One finally runs out of options other than going to Heaven (a very nice option).

Mariel, oh my gosh I am sooooo jealous!!!

I WISH Dr Roy Swank were still alive. He is fantastic and I would have loved to see him. I think any neuro who doesn't at least mention to the patient that they should look into Dr Swank's diet/study is dispicable. Diet does play a HUGE role in my MS as well as other diseases. I WISH I knew what I know today back when I was diagnosed in 2002. Unfortunately neuros really don't have nutirional training or knowledge and on top of that, most do not bother to inform the patient because they feel as though "this diet is too difficult nto follow" and mot wouldn't comply. This is sickening in my opinion.

It is also to see people comment that "diet has a placebo effect". In other words, implying that diet doesn't matter. That is just ridiculous and silly.

I am a vegan. My diet consists of ORGANIC, fruits, vegetables, nuts and seeds and I LOVE eating like this. I get my blood tested every 6 months and the only thing I was deficient in is vitamin D which I'm not addressing. B12 was not even close to being deficient. Approx 40% of americans are B12 deficient. Meat eaters are just as likely to be deficient in B12 as vegans!