This Is MS Multiple Sclerosis Knowledge & Support Community

Ramairdad,

The last I read, it wasn't a good idea to take an inerferon such as Betaseron along with LDN. Interferons reduce the effect of the immune system while LDN stabilizes and enhances it. The two drugs supposedly fight one another and the effect LDN may have is diminished.

Harry

Did I hear my name mentioned?

Hi, folks! Yes, I'm still alive and kicking.

As someone previously said here in this thread, I left the forum when I decided I didn't have MS. Hey, who knows what I have? They'll argue about it until doomsday (depends on the doctor I go see). So.............what I did was just found a doctor who ALSO doesn't care what the "name" is that describes the neuro disease I have, just as long as the meds I'm on work, then that's all that matters. I still have what I call "breakthrough" episodes, which are very minor and don't require a doctor's visit, but other than that, I am still maintaining a very good level of neurological function. I never regained ALL of it, and I do have some minor permanent damage still, but it is so minor that I can live with it and it doesn't show. I don't tell a soul anymore when it (whatever "it" is) kicks up, either. I got sick and tired of doctors telling me all the doom and gloom I might be facing.

I'll just remind folks (particularly the new folks) that the combination treatment I am on is similar to what the Aukland and Netherland researchers are onto. That is a combination treatment of an anti-convulsant (neuro-protection) and a norepinephrine agent (regeneration and prevention), (not to mention an agent that has genetic therapy mechanisms of action), which appears to help MS in the testing they have done so far.

Of course, we'll never know for sure what I have, as NOTHING is evident anymore when I am examined. But...........I did convince the National MS Society that this should be researched, and they have it all. That's where I left it all. What they might be doing with it, who knows. Eventually, Aukland and/or the Netherlands (with China right behind with some of the same conclusions) will continue to research the same thing I found. So, I'm in good company.

In short.............I'm doing GREAT!!! You'd never know now that I literally couldn't walk two years ago and was begging for a motorized wheelchair for relief! I'm still on my same meds and always will be. I ended up finding the "maintenance" dose of both drugs, and have not needed to tritrate upward any farther from the last time I posted here.

Anyway, I just popped in to say hello.

Be well,

Deb

P.S. As a reminder, I never was depressed, wasn't diagnosed with any type of depression, nor is the dose of desipramine I take anywhere near a level that would help depression anyway - but apparently IS of a dose good enough to keep my neurological function keep functioning!

Deb,

Good to hear from you again - you have been very greatly missed.

I know you don't know what you have but you're an honorary MSer given the contributions you have made to this site.

Not much has happened since you went away - no new treatments on the market, lots of trials, no real advances in understanding this disease (although the focus seems to be shifting to the need to protect nerves rather than just focus on the immune system).

There's now over 2,000 registered users of this site and many will not have been around to see some of the discussions which took place when you were regularly contributing.

Keep in touch.

Bromley

PS sorry this is off thread. In my view, OddDuck is an anti-depressant in her own right.

PSS If you get time, those who have recently joined might be interested in your views and the NZ and Dutch research that you mention.

Hey Deb,

Welcome back....missed your contribution for the past few months. The forum has been relatively quiet but then again it's summer!

Glad to hear that your health is holding its own and you are feeling OK.

Take care.

Harry

Deb,

I love that the docs tell you of all the doom and gloom you are going to face...but they can't tell you what you have.

Denver,

Yeah, hence why I stopped going to doctors (again). Remember, I've been tested and re-tested my whole life. They see the neurological damage over time, but..........well, they can't say why.

The thing is, also, getting any two doctors to AGREE about what I might have is the real issue. The bottom line to me is that they know it's neurological, but that's about it. I think the smartest thing I ever heard was from one doctor who said simply "we may never know for sure". Neurology and neurological disease is vastly unknown territory. I still think I'm going to donate my body to science at the end.

So..........I have a neurological disease. I guess that's all we need to know. What can be done about it anyway, even if it had a specific name?

Hey..........just FYI, though. In looking around briefly, it appears there is some recent renewed interest in desipramine for neurological disorders (the NMSS told me they thought there would be). I see they now think that it might be helpful in Huntington's Chorea. (Remember, not long ago, some researchers did find some indication that it was somewhat helpful in ALS, too.) So, they are getting there (i.e. studying the fact that desipramine does much more than originally thought).

So, since I have "something" neurological, it appears that no matter what it might be, desipramine is helping - not curing, but helping, and they appear to be finding all this out. Plus I do take it in combination with another drug, also. So they can call what I have "deb-itis" for all I care! Like was mentioned previously........just give me something that works!

Based on my research, I personally would take the same combination of drugs I am taking now, even if I DID (or might still) have ALS, MS, fibro, etc., etc. (take your pick...........each physician I saw did the same!) Shoot, there is still some debate that I might also be having seizures (but they have thought that since I was a kid, and can't find proof of that, either.) Good thing I'm also on an anti-convulsant now, I suppose. Might as well hit 'em all!

Thanks for all the good wishes and the same to you all.

Deb

Hi Deb, welcome back to your old haunts

Hi, Arron! Nice to "see" you too!

Sharon, Bromley and Harry..........how the heck are you folks doing?!

Sorry to have gotten off-track here a bit. As far as co-morbidity of depression and MS, I personally think that most physicians see something of a connection for more than just emotional reasons.

If you research what little they know about each medical condition physiologically, there are many similarities between the two (there is with bi-polar and schizophrenia, too). Having to do with glutamate, creatine, hormones (as Sharon mentioned), etc. etc. Even though depression itself isn't currently considered a "neurological" disease, in my opinion and speaking physiologically, it certainly could be. Trying to determine what came first sometimes is like the chicken and the egg. Did mild depression eventually escalate itself to causing a type of brain damage that over time could then be diagnosed as MS? Or did MS cause brain damage in parts of the brain that ends up causing depression? Could it be both?

Why is it that seriously depressed patients (who haven't been diagnosed with MS) have real (not imagined) physical trouble moving their bodies?? In many ways, researchers have described almost the exact same processes going on physiologically as what happens in the brain of MSers!

Now........on the other hand, depression does not always go hand-in-hand with MS. And CAN be just an "emotional" reaction to diagnosis and prognosis. The problem is, how can anyone tell the difference?

This again, though, leads me to believe there are different sub-types of MS. Take me for example. If I had stayed with one neuro, I would still be completely diagnosed and considered as having MS. Perhaps "benign" MS, but MS nonetheless. They would still be watching and waiting for it to eventually progress (and if asked now, they would probably say it WILL eventually progress. Slowly, but surely.) Actually, they could be correct. SOMETHING has progressed, because now the permanent neuro damage can be seen, but it has taken 30 years to get there.

Take fibromyalgia for example, too. Many MSers are diagnosed first as having fibro, and then over time, they are re-diagnosed as having MS. Some MSers will tell you that their physicians diagnosed them as having both. Coincidence? Or a connection? Some have fibro forever, but never get diagnosed with MS.

It's the "diagnosis" part of all this that is the "catch". Just because someone doesn't get "diagnosed" with MS, does that mean they really don't have it? Or it just doesn't quite fit the criteria (which changes all the time) for diagnosing MS................yet, that is?

Back to depression and MS. I am of the opinion that receiving treatment for depression is a good thing in any event, no matter how it arose. Medication used to treat depression does more to the body than just affect the one small portion of your brain that affects "mood". And indications are that many anti-depressants may indeed help the actual MS, too, even if it can't be completely proven...........yet.

No matter what is believed about depression, would it not be normal for anyone to experience sadness and/or emotional upset over any neurological disease diagnosis? (Not to mention frustration when dealing with the odd breed of physicians called "neurologists".......... )

Deb

Dear all,

By coincidence the following was posted on the Boston Cure Project site today:

"The Goldman Consensus Group, a group of MS clinicians assembled by the New York City chapter of the NMSS, recently published a review of depression in MS and recommendations for screening and treating MS-related mood disorders. The document covers:

-The epidemiology of depression in MS (e.g., lifetime risk of depression in MS may be as high as 50%);

-Evidence that certain MS treatments (corticosteroids and possibly interferon beta) may increase the risk of depression;

-The contribution of depression to the increased suicide risk among people with MS;

-Neurobiological causes and effects of depression in MS (unfortunately, little is known about this);

-Possible associations between depression and cognitive impairment in MS;

-Tools that can be used to screen for depression in MS (the group recommends the Beck Inventory with a cutoff score of 13);

- and Efficacy of different treatment approaches (the group recommends an integrated approach involving psychotherapy and medication).

The Goldman group noted that although depression can usually be effectively treated in people with MS, unfortunately, due to a variety of factors, depression often goes unidentified and undiagnosed. They urge clinicians who regularly treat people with MS to incorporate depression screening into their standard care, and develop individual treatment plans for those patients who show evidence of depression and/or are at risk for suicide."

Following my diagnosis my MS nurse considered that I was 'at high risk for suicide' and wrote to my doctor about this. Unfortunately, my only experience of this disease was a friend of my father who was slumped in a wheelchair and died at a relatively young age. My doctor suggested counselling and anti-depressants. I didn't take up either but decided that I would have to work through my feelings in my own time.

At the end of the day, it comes down to an individual's view on what is life and what life is about. MS takes so much away and puts a question mark over everything in the future. I have set some limits for myself on how much I will allow this disease to take. (I'll probably change once I get to these limits). Individual's views on this will be different. Things would be much easier if this disease did the damage and then went away for good. One would then know what you had to adjust to and if you wanted to adjust to it. The other issue with MS is that it affects everything (or could) i.e. mobility, cognition, isues relating to personal dignity. Small wonder that people with this disease get depressed.

A ton of anti-depressants would not give me back my ability to play football with my five year old son. But a treatment to stop my spinal cord degenerating and to rebuild some of it might. As I said before, the best anti-depressant would be effective treatments that stop this disease in its tracks - that's what we all hope for.

Bromley

PS Apologies if this sounds a bit bleak but I'm sick and tired of MS at the moment.