Here is my family history:
When other methods proved ineffective about 4 years ago, I began Tysabri infusions. It has seemingly stopped MS in its tracks. No new visible lesions on yearly MRI's and no new symptoms since beginning Tysabri.
When reading the results of the study (as best I could understand), the fact that my mother has Alzheimer's, and her sister and and I both have MS, is not a coincidence and highly suggests a genetic factor on the maternal side of the family?
What I fear is that I may have passed a gene on to my 14 year old daughter. Are there any tests or avenues available for early detection of any of the disorders which seem to be related to MS or the like?
I attribute my early detection of the disease, and aggressive therapy choices, for minimizing the damaging effects of MS (and I'm sure my more "lucky" genes than those of my neighbor or classmates which have progressive MS).
Is there any thing I can do to help protect my daughter, other than making her aware of how critical it is to be cognizant of her body and be very mindful of any changes that may appear to be out of the norm?
Any advice/knowledge you could share would certainly be appreciated. I am part of the TOUCH progam which I believe is an ongoing study group through Tysabri which tracks and shares my progress. Is there anything else I could to add and give aide to this large database being created?
Thank you for this thoughtful question. MS certainly has a genetic component to its development and manifestation; however, it isn't a simple genetic pattern, but more complex. There are over 100 "susceptibility" genes that have been identified that are associated with MS. In nearly every instance, these genes are part of the immune system. The "susceptibility" moniker emphasizes that just because an individual has genes associated with the disease, that doesn't mean they will go on to develop MS. In fact, there is evidence that a first degree relative of someone with MS will have a 4% lifetime risk to develop the disease themselves. We suspect that individuals with a certain genetic "load" of these susceptibility genes in addition to a yet to be determined environmental factor(s) triggers the MS disease process. So, genetics is a piece of the puzzle, but not the whole puzzle.
Please see the blog on this subject by Dr. Greenberg and Dr. Kinkel: READ MORE
If interested, you and your daughter may be eligible to participate in a genetics/epidemiological study on this subject through Brigham and Women's Hospital in Boston, MA: READ MORE
A. Scott Nielsen MD MMSc
Virginia Mason Multiple Sclerosis Center
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