Hi My name is Erica and I have been feeling intensely overwhelmed since finding out a month ago that a had MS. I have to sit down and try to make a decision soon about what treatment to start taking and I'm really struggling in this area. In my mind, I felt like the doctors sat me down and said, "this is what we found, you now get to get eat crap for the rest of your lfe but the good news and there is so many favored kinds of crap for you to choose from and only they only have a very small percent of side effects including death" UHMMMM... is this really my new life?
Its very understandable you feel overwhelmed, because it is overwhelming. Just know you are not alone. I was diagnosed in 2011. The first 4 1/2 years I was on Avanox, the first four years I didn't have any side effects at all. When the side effects (bad flu like symptoms) got to disruptive to my life. I made the switch to tysabri and had been on it since with no side effects at all. Some people dont like pills, some people cant tolerate shots or needles. My advice is pick one that fits your life and try it, if for some reason it's not a fit for you then try something else. At least we have some choices, it wasn't that long ago that there wasn't much to choose from.
good luck & I hope you find one that works for you.
Hi Erica, May i please suggest that you begin a journal, writing your feelings about the news that you are diagnosed with ms. The more you write the more you get out of your head and begin to make sense of what is going on. Also please consider joining an ms support group if there is one in your area, it will be a fast way to move on in your thinking.
There is the thinking that the disease modifying drugs stop the advance of the disease and prevents further damage that may be permanent, you will need to decide if you think this route is the way you want to go, but sorting through your feelings makes it easier to make a best educated guess.
Getting a diagnosis of ms is like opening pandora's box, seven billion, if not more, thoughts are free floating around in your head and you want to put them back into the drawers they belong, that's all, ha ha. You have the past the present and the future flapping around too, so all that is a very big overwhelm, and you are suppose to be able to think clearly while that is going on, boy, if you can do that, you are brilliant, unique, one of a kind, and a genius. So hug yourself a lot.
And, I appreciate you finding the right word, 'crap' immediately. It is a perfect description, well done. maria
We’re buddies!!! I just got diagnosed a month ago too!! 😃
I was really overwhelmed too, when I found out my diagnosis, and am still dealing with the grief of letting go of who I was and creating this new identity. Some of the things that have really been helping me cope are going back to the hobbies I did when I was a kid to calm down. Knitting was a major life saver, as well as coloring, drawing, journaling, and watching cartoons. So that might help you as well. I also read the book The Power of Now and that made a dramatic difference in the way I see my situation. I’d highly suggest this for you if you are feeling overwhelmed and scared. It’s an excellent book for dealing with really difficult situations particularly involving trauma or emotional shock, and it’s basically an instruction guide for how to keep your faith during those times. Also if you like animals kitties are entertaining and can distract you quite well from your situation. I love watching my cat be a spazz haha.
A couple weeks ago I was in your position. My doctors were pushing me to make a decision about my treatment plan. I was also really stressed about the side affects of the meds. One of the things I really think people don’t realize is that in medical trials, when researchers are testing a drug, they have to list EVERYTHING that happens, even if it is not directly related to the drug. I’ve been told by five different people that reading the side affects of meds is a protocol doctors have to do, but to take the side affects with a grain of salt because everyone is different and will experience different things with the meds.
I’m currently taking Mavenclad. One of the potential side affects was heart failure. This really bothered me. But I started asking questions. How old was the person who experienced heart failure? Was it caused directly by the drug or by something else? Your allowed to ask questions about the medical trials, and if your doctors are really looking out for you, they will be more than happy to tell you. I found out that the person who experienced heart failure was much older than me, like in his 70’s and the heart failure was caused by an infection in the sack next to his heart. And it was ONE person who experienced heart failure out of the thousands of people they studied. So the drug might’ve helped to make the heart condition worse (because it does cause immune suppression) but overall it wasn’t DIRECTLY caused by the drug, if that makes sense.
After I asked those questions about the medication I felt a lot better about taking it, though I was still nervous. I decided that it was worth the risk. What was worse? Going completely blind and losing feeling in my hands? Or experiencing some discomfort due to side affects from medication that would likely go away with time? I’m not trying to pressure you into taking the meds I’m just letting you know what my thought process was.
I started my treatment already and I’m actually glad I did. I already feel a lot better. I’m not as run down, I feel generally pretty content, and I’m experiencing no side affects.
You can also ask your doctor about Mavenclad if you’d like? It might help knowing that someone else took it and is having no problems.
I hope this helps you. Best of luck to you Erica.
This is Steve with the National MS Society.
A diagnosis of MS certainly is overwhelming, but I'm glad you found this site! I also wanted to invite you to contact the National MS Society should you be interested in accessing information, resources, and support. We can be reached at 1-800-344-4867, 9am-7pm ET. I also wanted to provide you the following link which will take you to the section of our site for someone with a new diagnosis:
Take care and please do not hesitate to contact us should you need anything.
National MS Society
I literally just signed up for this thing like 5 minutes ago. I was also diagnosed a month ago. I’m feeling the same way. It’s so overwhelming. I went to 2 specialists and got some of the same recommendations for meds, some different. My 2 main ones were Gilenya and Mayzent which is a brand new one. It supposedly is very similar to Gilenya but less side effects. Nobody knows anything about though, so it’s kind of alarming even though it’s new I wanted more information. Also seems like them want me on something right away with an active lesion but by the time start any meds it’ll be over 3/4 months since my mri.
Is there something in the air? I too was diagnosed almost a month ago! I had symptoms for serval years that were ignored or mis diagnosed. I’m very relieved to know I am not crazy but that there is an explanation finally. I have been struggling with drug decisions as well. My Dr suggested Rituxan and after doing a lot of reading I finally agreed with her on it and have scheduled my first infusion. This website has been a lot of help with all the information they have. I have decided I will continue to live my life and not let the disease control it. I hope you can find answers that make you comfortable with a drug and feel better about it all. We are all here to support each other so continue to reach out with any questions you have...I’m sure there is someone that has felt the same way and can offer help and support! Good luck!