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Coping with Multiple Sclerosis

  
 
Eek! A Freek!
19:30 / 15.05.08
My wife has just been diagnosed with MS.

It seems to be a pretty mild form, but in her first major (known) attack she lost the vision in her right eye for a couple of months then relapsed again for another month... It took a year and a bit for the doctors to finally diagnose MS. That was last month.

We were given a package to help choose what type of treatment she'll use. The choices are between either 1 of 3 natural protein injections (Avonex, Rebif or Betaseron)injected once every 3 days to once a week, or a synthetic protein (Copaxone) injection once a day. The synthetic option, strangely enough, has the least possible side effects. We think we're going to go with Copaxone, and for the most part, I'll do the injecting even if it's only subcutaneous and delivered by an auto injector... She hates needles.

It's a lot to take in, and I'd like to hear from any 'lithers about their experiences they've had with MS. How has it affected their lives? What treatments do they take? Does anyone know of any "Lorenzo's Oil" type treatments? Diet, exercises, supplements, etc...?

We know it's for life, we know that things can get real bad, and we're ready to face it together, but if available, I'd appreciate any available support.

Cheers
 
 
Eek! A Freek!
11:43 / 05.11.08
We just recieved a package from a drug rep to begin Copaxone injections. The pharmacy has ordered the actual drug (Pre-loaded in syringes) in and should be in next week. The drug is very expensive. I am very, very, very fortunate to have a good plan here at work.

The injections will be daily and it will be my job to administer them (My wife is not a needle person).

The drug is supposed to be up to 30% effective both in preventing attacks and the severity of attacks.

We are in preparation phase of begining the GI Diet (Glycemic Index) and a good diet should help with the MS (And my fat-bastardness). I have read that people have gone on lactose & gluten free diets and that has helped with MS, but Julie is not willing to go that far without 100% rock solid proof.

Anybody here avy experience with Copaxone?
 
 
grant
13:57 / 05.11.08
None at all. I did read something encouraging about marijuana and foot massages (against numbness in the extremities).

Where was it....

Here's a larger follow-up study to the one I recall, results expected in 2012. It's based on earlier findings that THC slows the progress of MS:

The CUPID trial follows an earlier study -- Cannabinoids and Multiple Sclerosis (CAMS) -- which suggested a link between THC and the slowing of MS. The CAMS trial saw participants take THC for a year -- the CUPID trial will last for longer and aims to assess the effect of THC on progressive MS.

And here's the abstract for the original CAMS study, and a nicely done BBC overview of their findings.

Basically, some symptoms are relieved by smoking (or taking) dope, but how useful it is on a deeper level is unclear.
 
 
jentacular dreams
14:01 / 09.11.08
Sorry to hear about this Freektemple, I hope your wife is handling the treatments well.

By explanation - copaxone is basically a fake target for the immune system, which takes some of the heat off the myelin sheaths they'd normally be attacking. Avonex, Rebif and Betaseron in contrast are basically cytokines (chemical signals used by the immune system) which try to modulate the immune response, dampening it down. In all honesty I'm a bit surprised they're not used in combination at least in the short term, but imagine there's probably a good reason.

In terms of Lorenzo's oil type therapies - I found a recent article (well, an abstract, I don't have full access to the journal) that suggests that upper respiratory infections can increase the chances of relapse (possibly due to the autoimmune aspect of MS), and that exposure to sunlight can reduce the risk (within reason anyway, no need to burn). However, without reading the paper I can't make any promises as to the validity of their data.

Oh, I read another paper a while ago suggesting that throat infections can be reduced by about 15-30% by gargling water three or 4 times a day, so that might help (probably after meals would be best). The same study also showed that gargling with povidone-iodine (a common over-the-counter mouthwash) was pretty much as good as not gargling at all, presumably because it killed the harmless bacteria as much as the harmful, meaning that the infectious ones had more room to grow.

There was also a couple of studies indicating that the causes for multiple sclerosis and type 1 diabetes (insulin dependent diabetes) may overlap, and that having one may increase your risk of another. Following on from that another study,(on mice though) suggests that n-acetylglucosamine may be therapeutic for both conditions. N-acetylglucosamine is the basic sugar in chitin (found in insect shells and some fungal cell walls), but sadly we don't have the required enzymes to break it down, so increasing the amount of (e.g.) shellfish in your diet is unlikely to help. Yes, following the GI and eating well is at worst unlikely to do any harm, as will mental and physical excercise when possible.

On the upside, if the N-acetylglucosamine therapy does well in human trials (which it hasn't reached yet, so to prescribe it would be difficult), it's damn cheap compared to the other therapies, so will probably be readily taken up by most health systems to supplement rather than supplant existing treatments.

Hope these are of help anyway, I'll keep you in mind and if I see any other relevant studies I'll try them up here. I should also note that I'm a biomedical scientist, not a medical doctor, so your doctors' advice trumps mine every time. But hopefully this is of some use and you can always consult your doctor about them. If during your reading you come across any literature that you're struggling to parse just PM me and I'd be happy to help.

edit - it appears N-acetylglucosamine (/N-acetyl glucosamine) is available as oral supplements. And that it improves skin condition to boot. Have a word with your doctor about it and see what ze says.
 
 
Eek! A Freek!
21:07 / 09.11.08
Thanks G.G.: I really appreciate the info. I'll remember to have Julie ask about N-Acetylglucosamine next visit. As she has an anaphelectic reaction to sulfa, we need to have the first injection by a doctor. After that, it's my job.
Cheers!
 
  
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