New with MS

[livelife41]

I am 41 and was just recently diagnosed with MS. I thought this may be a place to find comfort. I have been treating at the Mayo Clinic. I was told I had muscle spasms - but was I really having a seizure?? The spasms took over my entire body and took me down to the ground and made my body feel week. I am currently on a generic for Tegretol which is for seizures?? I have done the 5 day IV steroid treatment this year and last year. Currently I feel like I have lost a connection in my brain, like I know what I want to write, but put or type another letter down first before another. My eyes sting, and my back and neck feel stiff. At work I struggle and I wonder if stress has a lot do do with it at work. How about diet and exercise? Has anyone seen a change with a life style change? How about flare ups around your menstral cycle? I have both years! Does anyone shake at times - the whole body? I really do not want to go on meds for MS as Mayo keeps saying they have side effects.

What do you do - I am not one to take drugs if I do not have to ! Any suggestions or preference if they do put me on some?
Also about Mayo - I love my doctor. He is a med student, but he is so thorough and he calls me at home to see
how things are going and takes the time for me! My husband also likes him. At first it seemed like a lot of testing, but he was just making sure he covered all the things it could be as last year they could not make an MS diagnosis. It also helps to have a supportive husband!
I am looking forward to hearing from all of you!

[lydialou]

Welcome to MS World! It's a great place to be with lots of folks who can provide support and tell you about their own personal experiences with MS.

Yes the disease modifying drugs all have side effects. So does everythings else you put into your body-including chocolate! It just is a decision about what you want to deal with.

I have been taking Rebif since 2002 and have been relapse free since I have started taking it. I haven't looked at other drugs because apparently this works for me. Yes, I have to give myself shots-three times a week. But you just have to "put on your big girl panties" and do it. I have also taught my husband how to give me shots. My daughter is a doc so I have a third person available to help me out if needed.

I had a few things happen when I first started Rebif. Yes, I felt tired with some minor flu-like symptoms. But I medicated prior to the shot with advil/tylenol stuff and gradually it went away. I had a few problems with reaction problems at the injection site but when they changed to a smaller needle and make a few changes in the drugs make-up, that went away too. I don't keep up with where I shoot anymore because I don't have any issues. I still rotate around but I don't worry if I stick myself twice in the same vicinity.

The cost is pretty steep for all of these drugs but my insurance covers almost all of it so that is good.

Stress? Well that is just a part of life. When I retired about three years ago, I found that I was less fatigued. That was good for me. I exercise (cardio, weight training, riding a bike outside most of the year and inside at the gym when it's really cold, walking on the elliptical) and I go to yoga twice a week. My neuro wrote a script for me to take yoga so I can count that as a part of my taxes/medical expense. I have been considering adding swimming since that would be good for me, too, but I would have to change gyms and I'm not ready to do that yet.

I eat healthy-lots of dark green things, organic when I can, I make my own whole wheat bread (I grind my own wheat), I drink a lot of water-just all those things that we are supposed to do anyway. I take some supplements-calcium, red fish oil, magnesium, vitamin D,baby asprin, flax oil. You might want to check out the nutrition board for a "look see" about what others are doing for their nutrition. You might want to have your vitamin D level checked. Most of us have really low levels which can make you feel pretty crummy. My neuro did that and mine was low,too. I take 50,000 units once a week. It took a while for it creep up.

I didn't know I had MS until long after the female parts wer gone so I can't comment on cycles and problems with my ms.

Glad you are here!

lydialou

[Just a small town girl]

Welcome! We're sorry that you have to be here, but if you've got MS this is a wonderful place to come to ask questions and talk with other people with this disease.

Your neuro's right. All the disease modifiers have side effects, but they also are the only thing that's been proven to increase the time between relapses and delay the progression of the disease. So overall, most of us take one or another of them. But the decision of whether or not to medicate is a very personal choice, as is finding the right drug for you. Initially this is just a discussion with your neuro as to which ones they think you should be considering and then just a matter of finding the one that actually works for you.

I'm fairly new to all this (dx 10/10) and have been on Gilenya (the newly approved oral medication) for the past 8 weeks. Easily the best thing about the drug for me are the facts that its a pill so no shots (but you will probably have blood work from time to time) and head to head vs Avonex it was 50% more effective. I've had a very good experience with the drug. But the trade off is it's a very new drug. If you're interested in learning more about any of the drugs there's another section just on medications. Gilenya and Tysabri have separate sections. For me one of the biggest points was also what my neuro was comfortable with. I'm not a doctor and don't think I'll ever understand everything, so if my neuro can look me in the eye and say that they wouldn't have any reservation about taking a drug.. well that counts a lot with me.

Stress is easily one of your worst enemies now. There isn't a lot of hard science on it, but all the anecdotal evidence suggests that there's a link between stress and relapses and disease progression. So try to minimize it in your life or even better improve your abilities in handling stress because it just can't really ever be completely avoided.

A lot of people will tell you a lot of different things about exercise and diet. My neuro personally told me that exercise and a healthy diet are good for us.. same as they are for everyone else. It's good for you to exercise and eat right but neither of these things have been proven to really help with MS.

Like Lydialou said, a lot of us have vitamin D deficiencies and often get dr's orders to take a supplement. Fish oil supplements are also fairly commonly used.

I hate to say it because I understand not wanting to take a medication, but the only proven thing that helps with MS are the drugs and all studies indicate that the sooner you start to take them, the more effective they are at delaying disease progression.

Keep us posted on how you're doing!! Again, welcome!

[SNOOPY]

Hello livelife41,

Exercise/stretching has been shown to be beneficial for MS and even for some symptoms (fatigue, spasticity).

Information about MS and exercise:
http://www.nationalmssociety.org/liv...ise/index.aspx

Many women report an increase of symptoms related to their monthy cycles. This is seen in other neurological disorders as well -- those with seizures have an increase of seizure activity during hormonal fluctuations.

Information about MS and menstrual cycle:
http://www.nationalmssociety.org/abo...use/index.aspx

This URL will help explain spasticity and treatments that are used:
http://www.nationalmssociety.org/abo...ity/index.aspx

Your shaking is probably tremors.

Information about Tremors:
http://www.nationalmssociety.org/abo...mor/index.aspx

Cognitive problems is a common problem for many with MS. Is it the cause of your brain disconnect? Maybe but that would be for your doctor and you to decide.

Information about MS and Cognitive problems:
http://www.nationalmssociety.org/abo...ion/index.aspx

As far as the Disease Modifying Drugs (DMDs): I, personally, have never used them. I don't believe they work like we are lead to believe.

Not everyone that has MS uses the DMDs and each of us will have a different reason. Some have used the drugs and continued to progress, some seem to do fine on the drugs but would they have done fine even not taking drugs? No one really knows. Some have decided not to use the DMDs, progressed, and regretted their decision.

In the end it's up to the individual to decide what choice is best for them.

This disease is a crapshoot regadless of medication.

These are the different treatments used in MS:
http://www.nationalmssociety.org/abo...nts/index.aspx

[livelife41]

Thank you!

Thank you to all that have replied. I really seem lost in this web so I am open to suggestions if I am doing something wrong!