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    MS and POTS

    Hi. everyone I am new here. I am so thankful this site is here it has answered so many questions I have! I was wondering if anyone else with MS has been diagnosed with POTS(postural orthostatic tachycardia). There is research out there that they are related. But I just wanted to hear from actual people who have these things instead of medical journals by doctors. Thanks everyone!

    #2
    Kerbear84
    After seeing your post I had to reply!
    I am also fairly new here dx with MS last spring. I was first dx with POTS a few years ago after being healthy and very active my entire life. POTS hit me really hard and is still difficult to manage on some days. My Neurologist and PCP both agree that it's due to a lesion in the brainstem within the ANS. Is that the same with you? Are you treating your POTS? I haven't come across the research you're referring to concerning MS and POTS however, for me I've always believed they were linked somehow.

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      #3
      Hi to both of you! We had a big thread on this in General Q&A a while back when I was hospitalized with POTS after passing out and needing stitches. I was really unstable for a while, had to be kept in the cardiac ICU. I started a thread about it because I, like you, thought I was alone in all of this. I got tons of responses. I will look for the thread and post it here.
      I take a medication for it, and eat tons of salt, as well as stay hydrated. I too have a brainstem lesion that caused it.

      Hope you guys stay well.

      Take care
      Lisa
      Moderation Team
      Disabled RN with MS for 14 years
      SPMS EDSS 7.5 Wheelchair (but a racing one)
      Tysabri

      Comment


        #4
        Here is the thread:

        http://www.msworld.org/forum/forumdi...r=desc&page=15

        It is under the one called Autonomic Nervous System Dysfunction.

        Best of luck!
        Lisa
        Moderation Team
        Disabled RN with MS for 14 years
        SPMS EDSS 7.5 Wheelchair (but a racing one)
        Tysabri

        Comment


          #5
          Oh hi guys!!!! I am SO very excited to see that you guys exist, hahaha! I knew there were people that had the MS/POTS combo but hadn't found any yet and here you are! Awesome! Anyway, I'm going to be going to a POTS clinic in Dallas in December, have any of you heard of it? They have told me that they have had a couple people with our combo there before and that they had good results. I'm a little unsure, but don't have a lot to lose so I'm going to go for it! Anyway, was just glad to see there were others like us out there! I hope to keep in touch with all of you!
          ~Jessica
          RRMS, TYSABRI, DX-11/4/12

          Comment


            #6
            Fellow Potsie

            Hi everyone, I have struggled with symptoms of POTS since I was 13 or 14. It wasn't until being hospitalized, unable to walk at the age of 30 where I was finally diagnosed with POTS. I have had MRIs since I was about 20 where doctors keep looking for MS. These last 8 months (I'm 33 now) I feel like my body is just deteriorating and the fatigue is awful so again I'm being sent to have another MRI of my lower spine due to numbness in my left thigh, weakness in my right leg and extreme low back pain along with difficulty urinating (struggle to start), extreme extreme fatigue. I'm 33 and I feel like I have to the body of an 90 year old. Can all that be due to POTS or could I have MS as well? Also the week before my period is by far the worst for fatigue, pain, dizziness, weakness in legs, irritability is worse than usual. By far my worse symptom is the fatigue which sucks for a single mom of 2 very young children.

            Comment


              #7
              Some things can be put off and blamed on POTS, but mostly things that can be blamed on low blood pressure (intermittently), a feeling that you are going to pass out, tachycardia or fast heart rate, etc. Lots of people with MS also have POTS due to a brainstem lesion. Has she had an MRI? What were the results? It is something you should discuss with your neurologist for sure.

              I have MS and POTS. No fun! I am sorry you are going through this!

              Take care and let us know how it goes with your doc, OK?

              Lisa
              Disabled RN with MS for 14 years
              SPMS EDSS 7.5 Wheelchair (but a racing one)
              Tysabri

              Comment


                #8
                So sorry for all of you suffering from such systems. I had POTS due to Dysautonomia. But in my case, my BP/HR goes way up before it comes down. I do get the near-faint feeling, but it goes into weird, stroke-like symptoms. In fact many ERs diagnosed me with TIAs.

                I take a beta blocker which controls POTS for the most part. Sometimes it doesn't.

                I Have had swallowing issues, helped by EDG or dilating of the esphogus. I have breathing problems and when I am about to wake up from sleep I continue to paralyze and cannot move, but can hear.

                But there is no site of any brainstem lesions. I swear there IS a correlation as I finally got diagnosed with MS, Dysautonomia and a rare kidney disease that affects my electrolytes.

                I need more answers..

                Hope you find yours answers.
                Jan
                I believe in miracles~!
                2004 Benign MS 2008 NOT MS
                Finally DX: RR MS 02.24.10

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