SPMS, what would you do?

[Brainteaser]

Thank you Cureo and Harry for your cheerful responses.

In my book if an expert offers a view that there is unlikely to be axonal damage, then that is something to prize. After all, I didn't twist his arm to say so. Also, he has seen my earlier MRIs but could see only 1 lesion (perhaps a major one) this time. He also offered the opinion that my single lesion might make me a good research subject for stem cell therapy, for example - again, without pushing him.

C & H - There is probably some argument in the things you say, but as we get so little positive feedback, with MS, these things are to be valued. And Harry, if it's 10 years since your wife had an MRI, then maybe she might think about it and have it examined by an expert.

Cheers,
Phil

[HarryZ]

Phil,

And Harry, if it's 10 years since your wife had an MRI, then maybe she might think about it and have it examined by an expert.

Let's say Marg got an MRI and they found a few extra lesions. Or perhaps they wouldn't see any new lesions! This would accomplish what? Probably nothing.

The true measure of MS is symptoms and disability progression. It really doesn't mean much as to how many lesions an MRI may show because lesions can come and go or perhaps not even be detected.

The ophthalmologist who recently detected damage to her optic nerves at first thought he would do an MRI to see if it was the MS that was causing this damage. He changed his mind afterwards because after reviewing her history some more and consulting with another eye doc and Marg's neurologist, another MRI would be a waste of time and money.

Take care.

Harry

[lyndacarol]

Harry, I agree (!) when you said,

The true measure of MS is symptoms and disability progression.

[gwa]

Count me in as another ditto for
The true measure of MS is symptoms and disability progression



gwa

[bromley]

I think lesions are just part of a bigger disease. I once read that MS was a generalised disease of the CNS (i.e. it effects the whole CNS and is not just a focal disease based on lesions). I asked my good neuro if this was true and he said yes.

Dr Coles at Cambridge (and others) is of the view that inflammation is the first stage of the disease (which can be seen on MRI - gd enhancing lesions). But at some stage the disease changes and inflammation plays less of a role and neuro-degeneration takes over.

The following answer by a Canadian MS expert spells out the importance of neuro-degeneration which can be measured by the shrinkage of the brain.

http://www.msanswers.ca/QuestionView.aspx?L=2&QID=35

The Lamotrigine trial in the UK of SP MS patients will compare those on the drug with those on the placebo to see if the shrinkage (resulting from the neuro-degeneration) is different.

The small trial of testosterone in men with RR showed that it slowed tissue loss. Its the atrophy / tissue loss which causes the various symptoms and disability. In the UK Professor Esiri has been undertaking autopsies of MS patients to understand the mechanism causing the damage - she was surprised by how key neuro-degeneration was in MS.

So we shouldn't get too fixated with the number of lesions. It's the neuro-degeneration which is key - the loss of nerve cells (neurons) and their extensions (axons).

Thankfully much more work is going on to identify neuro-protective agents and some of these are in early trials / to begin trials. Hormones (as Shayk has said) are likely to offer neuro-protective benefits. And in the longer term ways of encouraging repair (not just of myelin but of neurons and axons).

Ian

[beyondms]

The true measure of MS is symptoms and disability progression. It really doesn't mean much as to how many lesions an MRI may show because lesions can come and go or perhaps not even be detected.

HarryZ,

100% correct. I want all MS patients to understand this. I recently did my third MRI and there were no enhancing lesions. Great news, right? Wrong because my disability is objectively and subjectively getting worse. Not by much but enough for me and others to notice.

I wake up every single day with back aches. I have to lie on the floor in the morning and at night to relieve the pressure on my back. I should be swimming but I am so demoralized that I do not want to see a gym. This is my bad attitude and I need too overcome this. I also think I need a new matress (Tempurpedic???)

Now, I do believe that all therapies that deal with halting the inflammation will benefit mostly newly diagnosed patients because their neurons are still relatively intact. Exciting new oral therapies will be out soon. Stay tuned.

The PPMS and SPMS patients need to rely more on new therapies that will regenerate nerves in order to feel better. These therapies are still 5 years away but you never know because stem cells are taking off according to my neuro. In fact, he is convinced that stem cell treatments hold amazing promise for many MS patients. I hope he is right.

Back to the supplements. Why don't I just take 200 mg of doxycycline at night or at lunch and leave the rest for dinner? Maybe this makes sense but I prefer trying to evenly distribute the supplements throughout the day.

Today, I woke up and immediately took my 100 mg of doxycycline with water and vitamin B12. I need to figure it out but I find that taking 200 mg of doxycyclin in one shot gives me a headache. And I still have not added the other stuff recommended by the Wheldon protocol.

I thank you all for your input and wish you a great week.

beyondms

[Lyon]

00

[Brainteaser]

Let's say Marg got an MRI and they found a few extra lesions. Or perhaps they wouldn't see any new lesions! This would accomplish what? Probably nothing.

You are probably right, Harry. Nothing much would be served. In my own case however, it has been benficial to link up with an MS researcher of international standing and who I feel is heading me in the right direction.

Cheers,
Phil

[HarryZ]

Phil,

You are probably right, Harry. Nothing much would be served. In my own case however, it has been benficial to link up with an MS researcher of international standing and who I feel is heading me in the right direction.

Cheers,
Phil

It's good to be able to hook up with someone who is devoting his practice and career to finding the answer to MS.

But I still get the feeling that when you look at the many directions that MS research seems to be heading (anti-cancer drugs, anti-biotics, stem cells, axonal damage prevention and repair, oral interferons etc) the docs still appear to be groping in the dark, hoping that their idea may be the right answer. At least they are slowly getting away from the sole auto-immune theory they held for decades and has kept MS research lagging so far behind.

Harry