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Just please

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Old 02-03-2005, 06:41 AM   #1
Join Date: Jan 2005
Posts: 4
mjd2jac HB User
Just please

I posted a few days ago. When I went in to the orthopedic surgeon and described my symptoms he ordered an immediate MRI of brain and neck. He call today and said it's very likely I have MS after consulting with the neuro guys in his group. I'm devastated. Will I be able to return to my normal activities (karate, weights, running) or do I have to practice energy conservation? What drugs do they normally give you? He started me on prednisone yesterday. Is this appropriate? How can I tell if this is just an episode? How long is a typical episode? How do you know if it's progressive? My mother had it but I can't use her as a model because she died of lung cancer a few tears after dx. Lastly, my wife passed away 5 yrs ago. How and what do I tell my daughters (13 and 11 ). Looking for some answers

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Old 02-03-2005, 07:52 AM   #2
Senior Veteran
Join Date: Jul 2004
Posts: 615
sunshine149 HB User
Re: Just please

i'm sorry to hear about your bad news. predisone is an appropriate treatment if you are currently having symptoms. my flare-ups have lasted anywhere from 2 weeks to 2 months. there are many medications out there: copaxone, rebif, avonex and tysbani (sp?)

the disease is called progressive when symptoms do not go away and/or worsen over time. keep this info helps and please keep us all posted.

Old 02-03-2005, 08:17 AM   #3
Join Date: Jan 2005
Posts: 307
Arraicha HB User
Re: Just please

MS is very different from one person to the next so there isn't anything to expect. I've never had an attack under 3 months long (mine usually last about 7), but the first few weeks are always much worse than the others.

You can continue any physical activity you did before as long as you feel up to it. I taught skiing for 3 winters after being diagnosed. I still dance, dive and I cheerlead for my university's football team. It's harder for me than for healthy people, but I love it and it doesn't hurt me so I continue to do it. In fact, exercise is very good for people with MS as long as it's in their capacity range.

The medication is relatively effective in reducing attacks and slowing the apparition of lesions in your brain. There are quite a few out there, given through self-injection.

Progressive MS is uncommon, especially at the beginning, so wait before you worry about it.

Old 02-03-2005, 08:22 AM   #4
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Join Date: Jul 2004
Location: California
Posts: 122
Heddi HB User
Re: Just please

The National MS Society webpage has been very helpful to me. I would discuss IV steriods with your doctor, solumedrol (SP). I took it for 5 days with a nurse administering it in my home for an hour each day and the results were immediate. I was barely walking and within 2 days I was back to normal. Wishing you peace and better health.

Old 02-03-2005, 12:19 PM   #5
Join Date: Jan 2005
Location: Virginia
Posts: 60
Filipinone HB User
Re: Just please

When I was diagnosed back in June 2004, with my neuro rushing to get me an MRI and sounding confident that I have MS. I also was scared, however after talking to the neurologist a little more, he indicated that I have a benign (infancy) case of MS; my symptoms don't last longer than a few hours. These message boards, the MS websites are very helpful and have kept me at ease. I am currently not on any medication although my neurologist wants me on the new drug Tysabri; I'm kinda holding out until I get pregnant or until the symptoms get too unbearable. I guess I'm stubborn.

Good Luck..and Keep in touch with the message boards....

Old 02-03-2005, 02:01 PM   #6
Join Date: Dec 2004
Posts: 61
hpygrl HB User
Re: Just please


I am sorry for what you are going through and the loss of your wife. As far as telling your kids, I dont think you need to do that anytime soon. You could go on with this and lead a realtivley normal life for a very long time. They won't understand the complexity of MS and they may worry about losing you too.
Good luck

Old 02-03-2005, 02:17 PM   #7
Join Date: Nov 2003
Location: Durango, Colorado
Posts: 1,443
Jewel2 HB User
Re: Just please

Like everyone has said, MS is different for everyone and there is absolutely no way to predict what your course will look like.

You need to find a good neuro, preferrably one who specializes in treating MS. There are more options than ever to possibly slow the progression, and it is much better to get started in the early stages before the damage really starts accumulating.

I would not immediately alter my lifestyle, but you'll need to listen to your body. If you are fatiguing or overheating, then take it down a notch. I love my daughter's attitude of not letting her MS define her and not being a victim of it. She continues to be the person she was before the MS, modifying only as necessary.

As far as your children go, be honest with them at a level appropriate for their ages. If they already know you have MS and you don't communicate what it really is and isn't, they'll imagine the worse. Kids have fertile imaginations! Make sure that they know that MS is not known as a fatal disease. Let them know that lots of people have it and most people can't even tell from the outside. Also let them know that over time some adjustments might need to be made and that's a part of MS. But you can't fret over what might happen.

For our family, my daughter's and mother's MS has drawn us closer together. I know this to be true for others as well and I hope that is the way it works for you, too.

As far as the prednisone, the oral steroids have never helped my daughter very much, but 3-5 days of the IV solumedrol is pretty effective. But you only use the steroids during an attack that is serious enough that it is really affecting your ability to do your daily tasks. As you probably know, too much steroid use often leads to bone loss. Also, for some people, after time they tend to lose their effectiveness.

I'm so sorry about your wife. Finding out you have MS on the heels of such a terrible loss is a rough thing. My daughter was diagnosed with her MS right after she struck and killed a pedestrian (not her fault and no charges brought against her). So I truly empathize with you having to deal with so much in so short a period of time. I'm sure you are still shell shocked from the initial blow of the diagnosis. The first year is challenging, no doubt about it. But we're here for you, so don't be shy about asking questions or sharing your concerns.

Best wishes,

Last edited by Jewel2; 02-03-2005 at 02:21 PM.

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