I've just been diagnoses with MS and feel a bit scared..help?!


Question: I've just been diagnoses with MS and feel a bit scared..help?
I spent 3 days in the hospital and just got home yesterday, I've been told that I have early stage MS. I'm overwhelmed by this. Wondering if there are others who have it and what their experience has been like. I'm also wondering, since I don't have children yet and want to very soon, how it will affect conception/pregnancy/delivery.
I guess I just really need to talk to others who have it.

Answers:

I was diagnosed with MS in 2003, so I've lived with MS for almost 8 years now. Looking back, I can honestly say that it has been no where close to as terrible as I first imagined when I got my diagnosis, and my family and friends who at that time were utterly devastated and tried their best to wrap me in cotton-wool, now more often than not completely forget that I'm sick.

I've had a few mild attacks (sensory disturbances, optic neuritis), but apart from that, some fatigue and side-effect from my weekly injections (I'm one of the few where the side-effects didn't go away eventually), I basically live a normal life. I work, I have a high active dog, I dig the garden, clean the house, go on vacation with my husband...etc.

Early diagnosis is good. Research has shown that if you have relapsing-remitting MS, then early treatment will delay the progression of the disease. Both the neurologists I've had are convinced that I am doing as well as I am because I got the diagnosis early on and started treatment immediately.

As for children. It is generally not ad viced to take any of the disease controlling MS medication while pregnant or trying to get pregnant, as some studies have shown that they might increase the risk of miscarriage. Also, don't take the medication while breastfeeding. Pregnancy seems to protect from MS attacks, so going off the medication while pregnant shouldn't be that much of an issue. On the other hand, the rate of attacks seem to go up in the month after birth, so you will have to weigh up the risk of attacks against the benefits of breastfeeding.

If you suffer from fatigue or other effects from the MS that could affect childbirth, talk to your neurologist and midwife/doctor about it, and of course speak to your neurologist once you are ready for children. He or she will advise what is best for you, how soon you can try to get pregnant after stopping the medication etc.

Being newly diagnosed is a scary time, but what helped me was to study MS and you might find it helpful as well. The National MS Society is a good place to start:

http://www.nationalmssociety.org/index.a…

I would advice you to stay away from the alternative treatment sites or sites where the MS information is not based on scientific facts, as most of these give incorrect information.

You might also find that well-meaning friends and family are eager to tell you about all the worst case scenario stories about MS that they know or try to make you try this or that alternative treatment. I'm not going to speak negatively about any of the alternative treatments, but keep in mind that so far none of them has been scientifically proven to work, so if you want to try a treatment, I would advise you to speak to your neurologist about it first. While most are harmless and some even good for your health in general, others can be harmful and even dangerous - also many are shameless scams to milk the frightened and desperate for money. I'm sorry for being such a cynic, but I just hate to see the newly diagnosed having to deal with all this on top of getting their heads round the diagnosis.

I have found that while it is important not to stick your head in the sand, but accept that there is a risk of you one day becoming bedridden and be fully dependent on others, it is equally important not to expect it. The way I see it, having multiple sclerosis is like having to cross the road of life blindfolded - yes, I have a higher risk of being hit by a bus, but that doesn't mean that I will be hit, and it certainly doesn't mean that I should stay put on one side and not life my life to the fullest.

All the best to you.




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