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Do you tell people you may have MS

Hi, I am new here! Basically, I was wondering whether or not you would tell your family that you may have MS? Other than my husband, I haven't told anyone. I think my older sibling suspects something is wrong but is it selfish to tell them? Its not confirmed, I have lesions on my brain and spine. The neurologist wants me to do a lumbar puncture and a VEP. Do I just wait or is it better to give them warning?

  1. Hi . Welcome to the community! I am glad you found us, especially at this stage in the diagnostic process. The whole thing can be pretty overwhelming, but you will find lots of support here. If it were me, I would probably tell them I am undergoing testing and that the MRIs showed lesions. I would probably also let them know that I am undergoing further testing to determine whether the lesions are due to MS or a different health condition. But that's me. I would really want the support from my siblings, but they are generally supportive people. Everyone is different in that regard. Some people find it too stressful to deal with the questions and attention that can come with revealing details at this stage. They find it easier to handle when they have answers. Lesions are a symptom of some kind of health condition whether it is MS or something else. So you are not "jumping the gun" by telling them about the testing, if that is your concern. Please know we are here for you whenever you need support or a place to vent. Thinking of you and sending lots of gentle hugs your way. - Lori (Team Member)

    1. No the neurologist wanted me to have this first. He really has been very good. At first he thought that the white spots from the first MRI might be a symptom of high blood pressure or cholesterol so I had to have 7 Large vials of blood done. Luckily (or not), my blood work was perfect. Then I got the brain and spine MRI done and after he saw lesions in that one as well, he said it possibly is MS. I was hoping that maybe if its my vestibular then its not MS but then I looked it up and it said a percentage of MS suffers battle with vertigo. Mine is so bad! Just dawned on me that he didn't say what else it could be.

    2. Hi . Unfortunately, vertigo is common for people with MS, but it is common to a lot of other illnesses as well. It does sound like your doctor is leaning toward MS, but fingers crossed that it is something even more manageable. Regardless, it seems you are in good hands with this neurologist. I hope you are able to put some of this out of your mind for a bit and enjoy the weekend. Warmest of wishes. - Lori (Team Member)

  2. , hi and welcome! I can't really add much to what Lori wrote, but please know that you just need to make the right decision for you. As much as any diagnosis you receive may impact your family, it's going to impact you the most, so you get the final say in how, when or if you share your health issues with others.

    Keep us posted, if you would like to do so. And know we're thinking of you!

    Best, Erin, Team Member.

    1. Thanks for joining us, and bless your brother! It really h elps to have someone in the process with you, because the diagnostic process with MS can take so long and it's so nervewracking! I had my first symptoms in 1978, and it took three years before I had my diagnosis. Forty five years later it can still take three years to rule everything out and come to a diagnosis! I will say that once I found out it was MS, I felt great relief. And now that there is such a wide range of treatments to choose from, finding out the diagnosis and getting started on a therapy is more than a relief, it can be hope as well! Believe it or not, it took me 22 years to get started on a therapy, and I'm still on the one I started with . With MS, ANYTHING is possible. I just hope that you stick with us, and keep us posted on how your'e doing, and read the articles and get to know the moderators and the writers and the various advocates we have in this community. Even if you don't end up with MS but something else, you will always be welcome here. Take care, take a couple of deep breaths, and settle in. You may get a diagnosis quickly, or it may take some time. But you are NOT alone -- we've all been through the diagnostic process -- and you're either not crazy or we ALL are!

      best wishes, in solidarity, Therry, a Team Member

    2. Thanx Therry! I just hope to know what it is so I can deal with it. I suppose my first symptom was feeling so exhausted in my 20s but maybe it was just because life is so hectic! At least thats what I told myself. Then I kept losing my balance and fell through the shower door, much to my toddler's horror! Even then, despite falling lots and feeling numbness in my left arm and hand; I convinced myself it was something else. Like carpal tunnel, and it wasn't. Last year, i really battled with vertigo and now the numbness is on both sides. Awful. I have terrible icy headaches that drive me nuts! Honestly, I thought my brain was dying!

  3. Miss Piggles, it took a lot of courage to take these frightening symptoms to the doctor and face the tests and hassles you have to go through to get a diagnosis. I commend you for your willingness to get answers and to do what needs to be done to learn to live with your new reality. i wish you good luck and open-minded doctors to help you find the answers you need, and give our regards to your todddler, and tell them they have a mom with superpowers of strength, courage and determination!

    All the best, Therry

    1. Hi , We're so glad you reached out. I hope you can tell by the responses below that you are not alone here and have all of our support in your journey. We went ahead and posted your forum to our Facebook page and so many community members shared their experiences and thoughts. If you're interested in what their takes were, you can find that thread here (Apologies for the terribly long link) 🧡 Kayleigh, team

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