My name is Sheryl and I am the second generation diagnosed with MS

[svd1970]

While I was only diagnosed with MS a year ago, I have watched first hand what MS has done to my father. I am 43 and he is 72. I see how it has taken the strongest most independent man I know and made him weak and housebound. I want to do whatever I can to postpone my dependence on others.

My MS diagnosis did not take me surprise as I woke up one morning a year ago and the right side of my face was numb, and any food I put in my mouth had no taste and had the texture of feathers. I had pain in my jaw and teeth. The doctor thought I had a sensory Bels Palsey but I insisted that due to family history that I wanted an MRI. It showed a large 2cm lesion and from there my MS journey began.

Now 12 months and one small episode of double vision 6 months ago I have 2 new, much smaller lesions. I guess Rebif isn't working. I am deflated, not depressed because I feel good. Next stop Tysabri if my January MRI isn't better. Waiting for the orders for the JC virus test that should have been in over a week ago but my doctors office has sent them yet. Thinking about a second opinion on my treatment.


** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[22cyclist]

Hi Cheryl and welcome to MS World! We are happy you joined!

Sorry about your father's condition. A good way to try and put off your progression is to start a med like Tysabri as it has an 80% efficacy for preventing new lesions and new exacerbations, whereas Rebif only has a 30%. Another drug to try if you are JCV + and unwilling to take a chance is Tecfidera. It carries a 50% efficacy for preventing new lesions and exacerbations. So either is a better choice for you at this point.

Have you called your doctors office about getting the JCV testing done? Either your neurologist or your PCP can order it. So if one is dragging their feet, check with the other.

Good luck with whatever medication you choose. It is your choice after all.

Take care
Lisa
Moderation Team

[Tawanda]

Just wanted yo say hi. I always notice a second generation MSer as i am one also. I also watched my mother suffer in unimaginable ways and was in a worse than usual place when I was a newbee.

After being on this Board and meeting other MSers, I can tell you no two of us are alike, even in the same family. It is like tuning a Kalidascope and a new pattern surfaces. I'd like to say that each new generation is better than the previous, but I am not seeing it.

If I have any advice it is to be nice to yourself. Take care of what you can. I try to eat nutritiously, exercise and go to every single event my daughter has. I try to tell myself that if I could (fill in the blank) yesterday, i can (fill in the blank today.

If you ever want to talk about familial MS, contact me at my email address which I put on file here at MSW (click on that green wreath thing at the top). My family is part of an MS cluster family study at the UofSF and and I recently got my results from a DNA kit where I had 2 MS markers show up

I have accepted having MS as best as I can. We are not the type of MSer who is diagnosed with MS without ever having heard of it. I think it is almost worse when you have seen this disease up close and personal. Of course if your loved one had a mild course of MS and a productive life with no bumps in the road, MSW is maybe not a site you would go to!

I just do not want to see my daughter with a post "3rd generation MSer" on here. The worst part of MS for me is the possibility of passing it on. MS really needs to go away now!

[amyrising]

Hello! I am very new to this all as nobody in my family has MS. I hope your journey is much easier on you than it was on your father.

I was wondering what JCV is?

[Kiki04]

We are also a multi generation family. Only I am the Mom with MS just watching her baby go through the diagnosis of pediatric onset MS.

We are doing what we can to prevent another generation being given a diagnosis. We are participating in a study to find the genetic markers from the University of California San Francisco.

As someone else has said MS is different for each individual-
I have been diagnosed for 12 years. I am still in the work force and walking unassisted. That doesn't mean that I am symptom free and with out challenges. This is not our parents' MS we do have treatment options.

[Kimba22]

Hi Amy,

JCV stands for the JC Virus (John Cunningham virus, named after a patient who had contracted it). This virus is responsible for something known as PML (Progressive Multifocal Luekoencephalopathy), which is a debilitating and/ or fatal brain infection.

This virus lies dormant in a large percentage of the population, and is not a threat to healthy individuals. It can be reactivated in those with compromised immune systems, such as those with AIDs. It has reared it's ugly head in some MS patients (namely, those on Tysabri). More recently, there have been cases from patients on Tecfidera and Gilenya, but those patients had other factors going on, which caused them to be susceptible.

There is a blood test that was approved to test for the JC Virus in 2012, so that's why you'll see mention of JCV+ or JCV- (positive means you have the antibodies for the virus, negative means you do not.) There is even a newer blood test, that tests the amount of antibodies present if you are JCV+. This "titer" helps determine your risk profile for contracting PML if you are JCV+. Some other factors that also increase your risk for PML while taking Tysabri include the length of time on the medication and prior use of certain medications.

This testing is important if you are taking Tysabri, because of the risk of PML while on therapy. You contract PML because the JC virus is present.

Hopefully, I explained it simply enough for you without leaving out important details. Glad you asked, since you'll see it mentioned again.

[Fed Up]

@Kimba22, I love that explanation, best I've read!
Thanks, fed