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 :hug:,

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!! :eek: 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!! :circlelove:

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!

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.

I also suspect that there are quite a few Neuros out there that are reluctant to change the label from RRMS to SPMS unless they absolutely have to.

Once you are secondary progressive, the current DMD's are no longer prescribed - and in a country like Australia, are no longer available on the PBS (Pharmaceutical Benefits Scheme which means that eligible users get them for around $35 per month - all Interferons, Tec, Gilenya and Tysabri included).

Even if you find a Neuro that will prescribe them (and I know a few people who would fit the criteria for SPMS - but are still using DMD's) then you would be paying full price.

Insurance companies would probably do all that they can to get out of paying too.

Just a thought.

My neuro (He's head of the MS Research and Treatment Unit of the province in which I live), reclassified my MS as SP a couple of years ago and said that according to research, the DMDs have limited value in the treatment or management of SPMS. According to him, management of SPMS at this point is pretty much focused on symptom control, primarily of inflammation and spasticity, so that those affected can maintain function and use for as long and as much as possible.

He also said that the future looks brighter for people who are younger and newly diagnosed with RRMS because of ongoing research into DMDs and other interventions which may serve to prevent progression. He said that other research is focused upon regeneration of the myelin in demyelinating diseases like MS, as well as reprograming the immune systems of those with all forms of auto-immune disorders.

The main obstacle to seeing these research projects through?
As always, its $$$$$$$$$$$.

From my perspective, it does not only seem so, but has strongly been hinted at by those in the medical profession that I have received care from, that they are more often than not, at a loss as to how to help me or others with SPMS manage symptoms.
In the last couple of years I have had more drugs offered to me on a "trial basis" than in the decades before. I even had my PCP say that he would really like me to try prednisone for the joint inflammation. This, after it was realized that the joint inflammation is from an infection and that he is fully aware that my liver is highly reactive to steroids and is contraindicated.

I share this because I think that it is vitally important for those who have any disorder to be careful about taking anyone's suggestions or recommendations with respect to treatment, without analysing for themselves, on how those recommendations might be potentially positive or negative for their own circumstances.
Keeping track of symptoms (symptom journal), as well as reactions to medications and treatment, over a long period of time, is essential for being able to do that effectively.

With love, Erika

Has anyone here even looked into the Dr Roy Swank diet? He was a FANTASTIC neuro and I wish he were still alive.

I am on that diet and I FIRMLY believe it benefits MS and Dr Roy Swank backs it up with PROOF in his study. It infuriates me that my neuro (on the day I was first diagnosed) never even BOTHERED to mention I might try looking into that and make serious changes in my diet... yet he had no problem pushing toxic drugs!!!

It is absurd how many disease are caused by the garbage people eat. I just read "The China Study" by Dr T Colin Campbell and "How to heart attack proof yourself" by Dr Caldwell Esselstyn.

Even Bill Clinton is a huge fan and is on this diet. People need to WAKE up and start CARING about what they are shoving into their mouths!! It disgust me how much heart disease and diabetes is costing this country. These 2 diseases are preventable with HEALTHY DIET!!!!!

Lilly, please see Mariel's post #49 to you...:)

http://neurotalk.psychcentral.com/post1064409-49.html