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Undiagnosed yet symptomatic

Doctors for years have considered the fact that I may have sclerosis yet none have officially tested for it, I woke up today with no feeling from the waist down I am completely scared to death as I keep pressing the issue and they keep doing nothing I don't know what to do other than try to press the issue again maybe now that part of my body is not working they will listen? I also have two different types of seizure disorders which they were more focused on than anything else I'm just scared to death is that something that can come from MS like sudden onset paralysis my legs or both hurting very bad for about a week prior to this and I started off my day with them being numb to the point where I could walk but just barely now I make it may be a few steps before they give out my journey has gone from being a mail carrier and walking 20 miles a day to my entire body from head to toe being attacked for the last 4 months yet no answers completely any input would be great thank you in advance

  1. Hi cjanssen, I'm so sorry to hear what you've been going through. This isn't the easiest advice, but, you need to seek out other doctors. Sadly, all doctors are not equal. Far from it actually. Diseases like Multiple Sclerosis are ones where new information is constantly being discovered. There are many doctors out there, even ones that claim to be specialists, that are not even close to be up to speed with the latest research and techniques. While it isn't easy, I can't stress enough, how important it is to find the right doctor and not be concerned upsetting the ones you've already seen. Many times, it requires seeing a physician that is part of a University, this may mean travel and it may even mean going on a waiting list, but it's very much worth it. Don't ever give up hope that someone will diagnosis you correctly, but, know that it may involve some work to find that person.

    1. Hi cjanssen,

      I am sorry to hear what you have gone through. You really need to get a second opinion or third opinion. You have to be pro-active with your health because no one is going to help you through this process. I went decades of going to doctors and nobody could figure out what was wrong with me. I had all sorts of symptoms, the most telling of which was, the legs feeling like they were stuck in cement or blocks of ice. It wasn't until I was 61 before I found out that I had MS and my contacting my last remaining aunt and I was told that there was MS in my family. So, please get a second opinion. And, please also get back in touch with us with your results.

      1. I thought I was having a stroke in September facial paraisis on left and had vision issue but more pain in my left eye. Was diagnosed with left optic neuritis in September and was started on IV solumedrol. Legs numb, weak, heavy, forgetfulness. Nuero was trying to rule out Ms as I have a few other autoimmune disorders. I had a MRI of brain, cervical and thoracic. Brain had scattered lesions, spinal cord clean and LP was clean. Dr has diagnosed me with CIS. I just have not felt the same since September and she keeps telling me I’m ok. I am on a waiting list to see a specialist. Was just curious if anybody had any similar stories.

        1. Josie,
          to read this and to know that you've gone without help is so distressing! Please know that it is not your fault that any of this has happened to you, much less that you've not yet been diagnosed!
          For right now, I am sending you a link :

          https://www.nationalmssociety.org/Resources-Support/Find-Doctors-Resources

          The steps are relatively simple and it will give you an option to find doctors who specialize in different fields, including neurologists.
          When you come to the last part, "distance" make sure you search out as far as you're willing to travel. The furthest option is 200 miles.

          All doctors have different personalities, but you shouldn't have to do a thing to get them to listen and be compassionate towards you! I pray that you will find a great doctor who will truly be understanding, and will go all the extra miles to get the help you've so long deserved!
          Please, please keep us posted Josie, and let us know if you need more resources or information. Thinking of you!!! Janus

        2. Uh, if TWO of your siblings have MS you might go to one of their doctors.

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