List of Links

So, MS has been diagnosed. Now what? The mind boggles at the questions. What is this illness I can barely pronounce? What will happen to me? I am a young woman, is it safe to fall pregnant? So many questions. Who do I talk to about the weird symptoms - are they part of MS or just my imagination? Can I get onto medical aid? What are my options for treatment? There is help out there.

The MS Society is a vital source of information and support. Validation - sometimes all one wants to know is that some-one else also feels the same way. The meetings provide one with the support and shared knowledge of those who also live with the illness. The Society is also a support for those who care for the person with MS. They need support, advice and acknowledgement. MS can complicate any relationship. When one of a couple has MS there will always be a third. MS is always there as the unwelcome interloper.

In-between the meetings there is another resource - the Internet.

The internet is potentially the most powerful source of information and support. Search the web and the trail is astounding. Need to know more about fatigue in MS and how to cope, or incontinence, or any other topic that worries you? Youíll find it on the web.

But there is a caveat. Let me give an example taken from recent experience. The promise of a cure or a new miraculous treatment is always tantalising. So, via e-mail you are alerted to something new.

You rush onto the www site and what you read is astounding. It all makes sense - the writer says the right stuff - the explanation is so feasible. It reads like a miracle.. Which is a sure sign to be wary.

Just put the patch on your arm and the symptoms melt away - but you must carry on smearing or else in 24 hours theyíll come back. Itís not a cure you see. And there is no guarantee itíll work.

The logo on the site is clever - the disability sign of some-one in a wheelchair but the image changes and the figure gets out of the chair and walks away. Manipulative.

A complaint echoes in the background - the FDA just wonít approve of the drug. Conspiracy theory?

Pages of recommendations by the semi-anonymous Catherine P or Reg D or whoever. Then there is a list of doctors recommending this newly patented treatment. But who are they, how can we contact them and what apart from the MD are their qualifications?

And the cost a mere $ 250 per month from participating pharmacies who will reconstitute the cream for you.

We who have MS are vulnerable. Success stories with this drug or that nutritional supplement carry the weight of promises that could be fulfilled. Maybe they will help.

What to be aware of when searching the web:
  1. Who sponsors the site?
  2. When was the site was last updated?
  3. Who are the authors of the site? Can you contact them?
I have a few websites that I really love. But new ones keep popping up [like mine!]. We are living through a new age of multiple sclerosis. If you have just been diagnosed with relapsing/remitting multiple sclerosis, the future looks very bright. If you have had the illness for some time, the future is still bright [although it might not look that way immediately]. The sites that I have chosen to highlight and link on my site fulfill my criteria :
  1. Credible support
  2. Credible hope, research
  3. Have great links of their own

I am always looking for new sites. Please contact me with your favorites.

And when I saw the same professor 10 years later with a bunch of symptoms which made no sense to me, he redid the Babinski. And this time it was positive. http://www.multi-sclerosis.org/Babinskisreflex.html

So who was Babinski, anyway?
http://www.whonamedit.com/doctor.cfm/370.html

Before I say anything else, I want to give you a good website
http://ms.about.com/od/signssymptoms/a/optic_neuritis.htm
I especially like this site because it does mention how optic neuritis affects a person with multiple sclerosis. Moreover, it discusses other effects multiple sclerosis has on eyesight.

http://www.myelinrepair.org/
What I love about this site is that it explains why the research done does not automatically lead to new treatment.
Having explained why research does not speed up a discovery of a cure, it shows how this organization operates.

https://www.acceleratedcure.org/

(The World of Multiple Sclerosis and the International Federation of Multiple Sclerosis Societies
(Available at http://www.ifmss.org.uk/)

Credible hope, research

Multiple Sclerosis research Centre
http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=1076

Exciting new drug
Acorda recently completed a Phase 3 clinical study of Fampridine-SR to evaluate its safety and efficacy in improving walking ability in people with all types of MS.
http://www.acorda.com/pipeline.asp

Support

http://www.multiplesclerosis.co.za/
South African site

http://www.mymsmyway.com/
friendly, supportive site. Helps you keep track of your illness over time. Gives info re tech aid s, medication etc

http://ms.about.com/
I really like this site. I find it friendly, informative and up-to-date. It is run by a doctor who has multiple sclerosis.

http://mscrossroads.org/
This is an excellent site for its links with other sites

http://www.mult-sclerosis.org/ms_link.html
another good site for further links