I’m sorry to hear this and there’s no reason at all that you should be in the dark about this but be aware that plenty of people live long and very prosperous lives while suffering from MS. There are quite a few celebrities that live with the disease including Montel Williams, Teri Garr, Annette Funicello, David Lander (Squiggy from Laverne and Shirley), Richard Pryor, and several others. The range of debilitation is wide with some patients experiencing a single attack never to suffer another all the way to complete disability.
Others have talked a bit about the disease but it really is quite complicated and even the experts disagree over the cause, progression, and efficacy (effectiveness) of treatment options.
As mentioned previously, MS is related to the degradation of the myelin sheath (a fatty substance that covers nerve fibers). There are really four forms of MS.
Relapsing-Remitting: This is the most common form with approximately 85% of diagnosed patients having it. It involves periods of flare up followed by periods of partial or complete recovery.
Primary-progressive: A slow but consistent worsening of the disease. This is relatively rare consisting of only about 10% of patients.
Secondary-Progressive: Initally looks just like the Relapsing-Remitting variety but then steadily worsens sometimes having flare ups and sometimes experiencing remissions.
Progressive-Relapsing: Continual advancement of the disease with clear exacerbations (flare ups). The patient may or may not experience recovery from the flare ups. This is also relatively rare with only about 5% of cases being this form.
Some other info that you may find helpful:
The myelin that is destroyed is being destroyed by what’re known as T-cells. The attacks by the T cells damage the nerves enough that they can’t do their jobs. Diagnosis of MS is often difficult since the exacerbations can come and go and there can be years between episodes. Often a preliminary diagnosis may be given with confirmation coming in the form of an MRI of the brain. If it is MS the MRI will show what are called lesions. These lesions are basically scars left by the disease (sclerosis means scarring).
Now, there are treatments for the disease. While they are not cures, there is ample evidence that they are disease-altering drugs which can delay or minimize the effects of the disease.
Working for one of the companies that manufactures a drug for MS has meant learning a fair amount about the disease. Currently there are four Rx treatments approved for the disease in the US. All are very expensive (> $10k/year) but they are covered by insurance and if no insurance is available there are programs that supply free drug to those who can't otherwise afford it. These programs are sponsored by each of the pharma companies participating in treating the disease. My company produces Betaseron, which is an interferon (it increases the resistance of surrounding cells to attacks by viruses). The other drugs in the market are Avonex, Copaxone, Rebif, and Novantrone.
This link details the treatment options, the regimens involved, and their side effects:
http://www.nationalmssociety.org/Bro...-Comparing.asp
I know you’ve already done some research on the web but here are some that you really should be aware of:
http://www.nmss.org
http://www.mspathways.com
If you take nothing else away from this post, please call this number 1-800-788-1467
This is my company's Beta Nurse hotline. By calling this number you will be put in contact with a registered nurse who has far more knowledge than anyone that you're likely to run into on the internet. She (I believe they're all women so I'm not trying to be sexist here) is there to answer any and all questions in terms that you will understand. She's there for the support of anyone who is affected by MS. Please take the time to call it.
If you have any further questions that I might be able to help with feel free to PM me.
Good luck and please let me know how your search for information progresses.
--Paul