This Is MS Multiple Sclerosis Community: Knowledge & Support

I read everywhere that the earlier you get on a treatment plan the better your results. My Question is what is considered early and where are you sitting on the EDSS scale to be early enough? Hubby had his first attack in 1998 but was not diagnosed till Jan 2005 after his second attack in Aug of 2004. It then took till July 4 2005 to be finally put on treatment. He is 2.5 on the EDSS scale. Is that early or late?????? We did have an added benefit of starting Lipitor in Aug 2004 as the cardiologist did not want to take a chance he had not suffered something to do with his heart although they could find no damage. It was with allot of pressure on our part to finally even get to a neurologist as I was pretty sure MS was going to be the final diagnosis. Our GP at the time kept telling me I was just looking for trouble and to stay off the internet.

I didn't start on anything until 14+ years into this disease, and ultimately chose LDN.

I don't think that the disability scale is the primary evaluation tool. I think that as long as he is still R/R, or he started out as benign or R/R, (but is now S/P) he can still go on the drugs.

Traditionally they don't see a point in putting people on disease modifying drugs until they had an opportunity to see the natural progression of the disease. A person may have a very benign course, so there is no point in injecting these strong drugs in your body, if it only helps to eliminate approx 30% of (zero ?) relapes.

Once they know that people are R/R, they usually like to see them get on a CRAB as soon as possible. They believe that the longer you are on them, the more benefit there is.

Cherie

Thanks Cherie. Then next Question is we have 2 very different diagnosis one PPMS from Dr. O'Connor at St. Mikes and one RRMS from Dr. Liesley Lee at Sunnybrook. How do you know who is right? We have chosen to go with RRMS and to be on Copaxone,Lipitor,change of diet as well as vitamins, flaxseeds and turmeric. Plus of course eliminations of food allergens in order to clear as many toxins as possible.

Relapsing-remitting multiple sclerosis is a form of MS in which symptoms randomly flare up (relapse) and then improve or fade (remission). This pattern emerges with the onset of the disease and may last for many years. MS can cause problems with muscle control and strength, vision, balance, sensation, and mental functions.

The disease does not advance during the remissions, but loss of nerve function that can occur during relapses is permanent. After repeated relapse episodes, the loss of nerve function can cause severe symptoms that do not improve .
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Secondary progressive multiple sclerosis (MS) is a form of MS that initially follows a relapsing-remitting course. Later on, it becomes steadily progressive, with ongoing damage to the nerves in the brain and the spinal cord. Attacks or relapses may continue to occur in some cases of secondary progressive MS, but some symptoms become constant and do not improve. Symptoms often get increasingly worse as the disease progresses.
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Primary progressive multiple sclerosis (MS) is a form of MS in which the disease is progressive from the start. Symptoms become worse and nerve function deteriorates steadily, though this occurs at different rates in different people. There are no periods when symptoms do not occur (remission). Primary progressive MS occurs in just a small number of people with MS. In these people, the illness may be severe from the start with a quick progression of neurological problems over several months.
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I tend to agree that he started out as RR, because of the long periods without progression, and the fact that he did have attacks. Was it the first Neuro, or the second, that dx PP? He may have moved to SP now. but so long as he started out RR, he can go on one of the interferons (can't remember which one is good for SP too though . . .?).

Once he gets too far along, there isn't much that the drugs can do to help, or at least this is what my Neuro told me recently (when I opted for LDN instead of CRABs).

Cherie

Dr. O'Connor felt he was PPMS due to the fact the lesions 4 out of 5 are on the spine which is indicative of PPMS(at least he said so). Now Dr. Lee says since he showed improvement on the chest and leg area and is back up to normal that he is RRMS. I've read all the how to diagnose and I see both points. We will not be going with the interferon at this time as it is one more case IMO where they are mixing animal or human DNA where it does not belong. Hence we chose synthetic at this time. Who knows what is the right path. As of now we are on a path and with luck we can just keep walking it.

Most of my lesions are in my spine too. I've never had a spinal MRI, but my symptoms and the type of attacks I have (Transverse Myelitis) confirms that I have spinal lesions.

I have never heard that spinal lesions = PP . . .?? I know that TM attacks are very dangerous, and in one attack we can become permanently bedridden, but this doesn't mean PP.

Click here

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Cherie

Well actually this is the guy that says it equals that and since he has a few books out it intimidated poor hubby and left me muttering ASSHOLE as we left his office. Enough said on that subject. Why have you not had a spinal MRI????? I'd tend to demand one Lesions by the way are just a small part of the picture IMO I believe over all health and mobility is way more important. Sorry there is no link to my book as I haven't written it yet. But just maybe I shall in the future. Dr. O'Connor by the way gave us a list of 5 things he could help us with:
1: Avoid Extremes of Stress
(We did that we will never see him again still muttering ASSHOLE)
2:Get enough rest
Actually have hubby on a 2 hour break and rest each day.
3:Avoid viral infections if possible.
I think that means bob and weave martial arts talk
4:Take extra vitamin D3 2000-4000 MIU/day
Doing that at 2000iu
5:Try to exercise at least 3 times per week
We do an 1/2 hour a day stretching as well as swimming an hour as well as hubby is a roofing contactor(up and down ladders all day). Does That count


Still muttering ASSHOLE by the way.


Paul O'Connor. MD, MS Clinic. St. Michael's
Hospital, Toronto, ON


About the Author
Paul O'Connor, MD, MSc, FRCPC

Paul O'Connor, MD, MSc, FRCPC has been treating people with MS for 20 years. He is Associate Professor of Medicine (Neurology) and director of the MS Clinic at the University of Toronto, and chief of the Division of Neurology at St. Michael's Hospital.



Book Overview

Multiple Sclerosis: The Facts You Need is an invaluable guide for anyone affected, directly or indirectly, by this complex disease. It combines authoritative medical advice and practical hands-on tips. The book covers a wide range of topics in a format that is easy to understand. Topics include:

What MS is, and who gets it;
How MS is diagnosed;
Why the disease affects different people in different ways;
How "relapse-remitting" MS differs from "progressive" MS;
How people with MS, and their families, can adapt their homes, careers and lifestyles to cope with the disease;
Which treatments work, which don't and what help is on the horizon.

Ah yes . . . I know the Dr. O'Connor you speak so highly of.

Actually, my sister bought me his book "Multiple Sclerosis, The Facts You Need", and I was really angry the first few times I read it. I'm not sure what it was that he said that got my back up, but I was tempted to throw it in the trash from the get-go. I don't feel the same way any more (and the book didn't change ), so I think I just didn't respond well to his approach to topics.

I didn't even have a MRI during my first attack in 1991, when I was dx with Probable MS. I couldn't see any point in knowing what was happening, especially since there were no drugs or remedies available at the time. I opted to change my lifestyle (including all of the list of things you wrote in your last post, plus avoiding heat), then I carried on in denial. It worked, for 12 yrs.

I had my last MRI in 2003, and probably won't have another. Personally, I don't see the point in knowing how many lesions MIGHT be there. The vast majority of lesions aren't even visible on a MRI, so why bother? I base my progression on "how I am progressing"; am I getting worse, are my symptoms bothering me; am I having attacks?

Relapse rate doesn't seem to correlate with disease progression either though . . . so basically I go on how I feel.

Cherie

Cherie you sound like one very smart Lady.

Melody,

The issue of PPMS and RR MS are not straightforward. As usual with this disease there are many complications:

If someone has an attack and makes a full or partial recovery they are usually classified as RR. But I've seen papers which say that the RR phase can last between 1 and 33 years i.e some move to SP in a short period of time while other take much longer.

Some papers argue that SP and PP are pretty much the same in terms of the timescale to different disability levels so could be the same phase of the disease (for SP and PP inflammation is less of an issue - it's the slow death of axons / nerve fibres).

One leading MS researcher in the UK believes that using powerful immuno suppressants such as Campath can convert the disease from RR to PP.

To add to the complication is relapsing progressive. Also those with PP can experience relapses during the disease course.

I have seen papers which say that PP usually results in more lesions in the spine and less in the brain (than RR). Those with PP seem to experience more walking problems, but so do those with SP.

The other complication is so called benign MS and many believe this to be a misnomer i.e. a benign course can turn progressive at some stage.

So it's a complicated story - is it one disease or many, is the way the disease progresses a result of our body's ability (or not) to repair damage?

Given that your husband experienced an attack this would usually be interpreted as RR. One can also still have relapses during SP!


What really confuses me is that there are a bunch of so called experts out there with Phds and 25 years experience etc etc and, quite frankly, they don't have a clue what this disease is about. Nice work if you can get it! I wish my employer would pay me for not knowing much at all but unfortuntely I'm not a neurologist (they also don't know much about ALS, Alzeimers, Parkinsons etc - wonder why they take so long to qualify?) (Apologies - having one of my bitter days against neurologists).

Bromley

Would the death of axons / nerve fibers have showed up on the MRI or was he just guessing

Our new neurologist by the way is great and is very easy to work with.

Melody,

It's the death of axons / nerve fibres that results in permanent disability. The clinical tests should provide the neuro with a sense of what damage has occurred. Some disability can result from demyelination but can be reversed if remyelination takes place. My neuro told me that if repair hadn't taken place in six months then it was probably permanent. However, those on Campath and Tovaxin have seen improvements in disability probably by rescuing axons / nerve fibres from the inflammatory environment they were under.

As usual another are of confusion among neuros - is it the inflammation that leads to axonal damage or is there another mechanism in play. For PPMS inflammation doesn't appear to be a major player and that's why imuuno-suppressant / anti-inflammatory treatments do litle to help.

Bromley