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New to this

Postby Daisycat » Wed Nov 01, 2017 2:50 pm

I’m recently diagnosed with ms and have no idea how to get through the day without crying at least once. The only thing that keeps me going is my goal of weighing 100 pounds and getting 50000 steps a day. I have/had my dream job. I know once they find out I’ll be fired. I see my neurologist tomorrow to see what drugs I’ll be on and I’m terrified of the side effects from them. From what I read on cdc drug websites they are all pretty bad. Anyone have advice for drug choices for a newly diagnosed person?
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Re: New to this

Postby ElliotB » Wed Nov 01, 2017 3:20 pm

"I know once they find out I’ll be fired."

Actually the ADA (American with Disabilities Act) gives you plenty of job protection/security.




"I see my neurologist tomorrow to see what drugs I’ll be on and I’m terrified of the side effects from them. From what I read on cdc drug websites they are all pretty bad."

Actually, that is not the case for many of them. Do your homework - you should be able to find one that you are comfortable with.

As important as a medication may be, there is no substitute for good diet, exercise, nutritional supplements and lifestyle changes (elimination of all stresses in your life). There is a lot of info on this site that you will likely find helpful.
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Re: New to this

Postby Daisycat » Wed Nov 01, 2017 3:40 pm

If my performance endangers a patient they have a right to fire me. I feel like my every move will be watched much closer. As for the drugs they all have at least one nasty side effect and having to take off work for infusions would be hard to explain
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Re: New to this

Postby ElliotB » Wed Nov 01, 2017 4:01 pm

Your employer will need to make reasonable accommodations for you. And ultimately, if that is not possible, you may have to make a career change. BUT the likelihood of you being terminated because of a disability is just about zero.

"As for the drugs they all have at least one nasty side effect "

Not everyone has side effects from DMDs for MS, I take one and have no side effects. My experience is not unique - of course there are no guarantees. There are many tips on this site on how to best deal with DMDs and their possible side effects. Hopefully what ever you end up taking will not cause you grief... Do your homework!
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Re: New to this

Postby LiteralGirl » Wed Nov 01, 2017 4:23 pm

Daisycat wrote:I see my neurologist tomorrow to see what drugs I’ll be on and I’m terrified of the side effects from them. From what I read on cdc drug websites they are all pretty bad. Anyone have advice for drug choices for a newly diagnosed person?



I was diagnosed in June. I have had an exercise-fatigue-related dropfoot for many years, but never had time to go deal with it. Always taking care of everyone else, you know. Anyway, I decided 2017 was going to be the year I'd get it dealt with, and after spine surgeons, multiple orthopedic surgeons, and 2 neurologists, I was told I have MS. AND that I have likely had it for over 20 years, and just had very few symptoms!

Anyway, my doctor told me I could choose whichever therapy I wanted, but that he suggested Copaxone. So, after reading all the risks with all the others, I went for Copaxone. I have been taking it since mid-September, and it's really ok. I thought I'd never be able to deal with injections, but my Type-1 Diabetic stepdaughter (since aged 12!) told me to "buck up". :-D And it's OK.

I did start having pretty uncomfortable allergic reactions after the first month, but right now I am taking Benadryl about 30 minutes before I inject, and it's significantly better. I just remind myself that I do not want more lesions, especially since I have so many, despite being a low-symptom patient. I sort of feel like I was ridiculously lucky and I don't want to test fate! And the risks involved with all the OTHER DMD meds were quite concerning, as compared to "redness, swelling, and rarely, shortness of breath". So this Copaxone is my new normal.

Good luck!! :-)
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Re: New to this

Postby Kittie » Thu Nov 02, 2017 12:32 am

Hi,

I remember this time really well. I thought I would be in a wheelchair within 12 months. (1979)

I looked at everything, spent time looking at diets and anything natural that would help. I decided to have a healthy diet, evening primrose oil was good at that time, I took that. I personally never touched the drugs offered but that is your personal choice.

Has anyone heard of Oxygen Drops? I started these 15 years ago and they took my fatigue away. I would not be without them. Also I use an electronic machine for my leg muscles.

I was diagnosed in 1979 after a lumbar puncture but I had symptoms from my early 20's. I am 70 yrs. old next March and I am still walking, I use a walker's stick for balance when I am on my own. My right foot doesn't lift up very well so I have a leg brace. But hey ho I am still out there. I finally retired from fostering children this year. I have had an active life and not missed out on much. Be positive and have faith in your future, it might not be as bad as you think. Things are moving forward fast.

Have your vitamin D levels checked and read up on the Dr. Coimbra protocol as this is the way forward for me. It might be for you!

Kittie.
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Daisycat

Postby koneall » Thu Nov 02, 2017 10:41 am

The Daisycat thread has been locked so no more posts. I didn't see anything horrible going on there, except for a depressed woman. I was diagnosed with MS four months ago. I've been a hypochondriac since age 5. So I alternate between depression and hope and spend a lot of my day reading all I can find on the subject.
kaypeeoh
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Re: New to this

Postby Daisycat » Sun Nov 05, 2017 4:04 pm

I’m not sure why it was locked either. You are correct thought that I am beyond depressed and devastated that all I had planned for my life will never happen. I’m supposed to start Copaxone soon. I’m stressed about how much insurance will cover because these drugs are very expensive. I know I’m “lucky” right now to be symptom free but I really don’t see the point in just sitting around wondering every day if I’m gonna be able to see or walk the next day. For anyone who can accept this disease and be happy you are amazing. I’m just not that strong. Now it’s just my goal to make it through the day without crying.
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Re: New to this

Postby Kittie » Mon Nov 13, 2017 1:25 am

Who says you are not strong? It comes from inside.

Maybe what you think is important isn't what is important.

If you havn't got any symptoms, at the moment, then I would look at Dr. Coimbra's protocol and Vitamin D3. You can try to fight this before it takes over. It is your choice at the end of the day.

Love, Kittie.
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Re: New to this

Postby Daisycat » Mon Nov 13, 2017 8:08 am

I’m taking vitamin d, b12, magnesium, c , and a multi vitamin. I’ve cut out as much fat in my food as I. Can, and I try to work out at least an hour a day. I do take the day off if I work a double shift. I don’t want to over do it. I’m just worried that despite doing everything I can to be healthy I’ll have another flare. I even have someone I can talk to and be 100% honest about how terrified I am. Sadly my bf doesn’t like me being negative ever. I see where he’s coming from but some days it’s just not possible. I’ll have to look into that drs protocol. I’m sure I’ve seen it but I can’t remember it.
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Re: New to this

Postby Kittie » Mon Nov 13, 2017 8:53 am

Google it. Dr. Coimbra vitamin D3 protocol.

Today is the first day of the rest of your life. It might have better things in store than you were expecting. Nobody knows what is going to happen. You have already started to put positive things in place. You need a specialised Doctor to help you. They are listed in the protocol.

Imagine good things and good things will come. It also works the other way. Always try to think positive and draw positive things to you.

Love Kittie.
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Re: New to this

Postby Daisycat » Mon Nov 13, 2017 9:17 am

I’m trying really hard to be positive, but I have a very bad habit of using “dr google” and that ends up terrifying me. I’m gonna google that tonight after I leave the gym and work. My biggest problem is since no one can tell me what’s going to happen in X amount of time I’m struggling with if I should go ahead and finish something I had planned for my life or just pass on it since it would be a lot of stress and Work but the end result would be something I’ve wanted for awhile. Thank you for all your advice. You are very supportive and I love your username
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Re: New to this

Postby Zyklon » Mon Nov 13, 2017 10:16 am

You have been changing in a good way, that's great :)

Let the fear motivate you but not control your life. It can be a tool for better health. Read success stories and stay away from horror ones. Don't join the dark side. Take a step, share, another step, share, soon you will enjoy your regular life.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
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