Announcement

Collapse
No announcement yet.

Autonomic Nervous System Dysfunction

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    #46
    Reply to Jan re "paralyzing"

    "I still have frequent "paralyzing" whenever I am trying to wake up. That is I can hear, but not move. I actually feel fine, unles I have to scratch my nose! LOL Getting the electrolytes balanced is the key."

    Jan, I also have MS and decades of experience with the same "paralyzing" upon waking. My super-specialist neuro dx'd me with "Familial Periodic Paralysis." Most neuros will never see it in their entire careers. It is not part of MS. Mine, untreated, would last about 20 minutes each morning. There is an unbelievably simple remedy. At bedtime, take a 250mg tablet of acetazolamide (formerly known as Diamox. I have had only a few episodes of waking paralysis since starting this routine. And it is a cheap generic drug. Needs a prescription though.

    You are correct about electrolytes. Low potassium is involved in this, but you would be extremely lucky to get your blood drawn during the paralysis, which is the only time the K is low.

    Comment


      #47
      Originally posted by nannycarol View Post
      "I still have frequent "paralyzing" whenever I am trying to wake up. That is I can hear, but not move. I actually feel fine, unles I have to scratch my nose! LOL Getting the electrolytes balanced is the key."

      Jan, I also have MS and decades of experience with the same "paralyzing" upon waking. My super-specialist neuro dx'd me with "Familial Periodic Paralysis." Most neuros will never see it in their entire careers. It is not part of MS. Mine, untreated, would last about 20 minutes each morning. There is an unbelievably simple remedy. At bedtime, take a 250mg tablet of acetazolamide (formerly known as Diamox. I have had only a few episodes of waking paralysis since starting this routine. And it is a cheap generic drug. Needs a prescription though.

      You are correct about electrolytes. Low potassium is involved in this, but you would be extremely lucky to get your blood drawn during the paralysis, which is the only time the K is low.
      Interesting! How scary, especially on top of having MS. It's unbelievable everything that can go wrong with the human body. I'm glad you were properly diagnosed and take medication that works to help prevent this!

      Thanks for sharing this information and, BTW, Welcome to MSWorld! Hope to see you around.

      Best wishes,
      Kimba

      “When you change the way you look at things, the things you look at change.” ― Max Planck

      Comment


        #48
        Actually, jmartin0424, my Neuro, just yesterday decided to refer me to an MS Specialist. Don't know who or where yet.

        Going to start a thread on who does where in my area.

        thanks!

        Comment


          #49
          Wow Seal!

          I would almost think we had the same doctor. I go for another MRI next week. I'm legally blind, esophageal dysphasia, heart arrhythmia and drop foot on the left side and that's just the major stuff. I don't think my doc knows what to do with or for me anymore. Extremely discouraging when your doctor gives up before you do, lol.

          Peace,
          Anna

          Comment


            #50
            Blood pressure & adrenaline dysfunction

            Yes, I have Autonomic Nerve Dysfunction too. The problem began the same way as yours did, sudden and unexplained drops in blood pressure leading to near fainting PLUS a tremendous craving for salty things. This occurred even when just standing around or sitting quietly. My blood pressure has always been very low so sudden drops were very alarming.

            My GP is brilliant and he immediately went to the idea that my adrenal or pituitary glands were not functioning. I went through tests to see if I had Addison's Disease (which means your adrenal glands have shut down and are dying off).
            Everything came back normal so, after my Heart Specialist, Endocrinologist, GP & MS docs put their heads together I was diagnosed with the Autonomic dysfunction caused by MS damage.

            I eat more salt, use Fludrocort when my blood pressure and nerve jitters occur, I've been taught what to do when blood pressure drops, we always have a BP monitor nearby and I made sure my dentist and others know I have this condition. It's important to tell your dentist because of the position you lie in during a routine visit and the added stress to your system.

            Important Lessons
            1. Never assume a symptom or problem is MS until you've been checked out, by your GP minimum.
            2. Be prepared for surprises : MS affects everyone differently so this should remind you that YOU are unique with your disease. We can read lots of books and neuro studies that talk about MS symptoms but rare symptoms won't be added to mainstream publications.
            My Autonomic Dysfunction appeared after having 20 years of MS.
            3. Do your best to be your own patient advocate. If something weird or painful is happening then get yourself to your doctor (don't wait for a family member to suggest you go). Your doctor will appreciate your concern and, if you don't have anything major happening, you will at least get answers and peace of mind.
            4. Wear a medical alert tag or bracelet that says you have very low blood pressure/blood return. I use the Road ID wrist band so the tag will speak for me if I'm unable to.

            I am SO glad someone brought up this subject as I never read anything that said MS damage could affect our Autonomic Nerve functions & have felt a bit alone with this dangerous condition. It is a scary problem to have considering all the things that go on "automatically" in our bodies but, once diagnosed properly, you can learn what is happening & how to help yourself.

            Comment


              #51
              Originally posted by nannycarol View Post
              "I still have frequent "paralyzing" whenever I am trying to wake up. That is I can hear, but not move. I actually feel fine, unles I have to scratch my nose! LOL Getting the electrolytes balanced is the key."

              Jan, I also have MS and decades of experience with the same "paralyzing" upon waking. My super-specialist neuro dx'd me with "Familial Periodic Paralysis." Most neuros will never see it in their entire careers. It is not part of MS. Mine, untreated, would last about 20 minutes each morning. There is an unbelievably simple remedy. At bedtime, take a 250mg tablet of acetazolamide (formerly known as Diamox. I have had only a few episodes of waking paralysis since starting this routine. And it is a cheap generic drug. Needs a prescription though.

              You are correct about electrolytes. Low potassium is involved in this, but you would be extremely lucky to get your blood drawn during the paralysis, which is the only time the K is low.
              Interesting that you too have had this paralyzing episodes. One of my MS doctors thought it could be periodic paralysis, but when I was evaluated for hypokalemia, my kidney doc ruled out periodic paralysis but diagnosed me with GITELMAN's. It is a rare kidney disorder (not a disease) where I spill out electrolytes. AND this disorder can result in paralysis.

              I am going back to my sleeping disorder doctor soon and I am going to see what he thinks as it happens when I am trying to wake up either in AM or after I fall asleep with a nap.

              I wrote down that med you are on and will discuss this with some of these specialists I see. Thanks~

              Jan
              I believe in miracles~!
              2004 Benign MS 2008 NOT MS
              Finally DX: RR MS 02.24.10

              Comment


                #52
                I have the same problem but the opposite. I have high BP spikes and my pressure is near to impossible to control. Too many meds I pass out because at home it's low, if I walk it jumps up to 200/108. They tried beta blockers but it lowers it too much when I am at rest.
                Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

                Comment


                  #53
                  Originally posted by Katje View Post
                  I have the same problem but the opposite. I have high BP spikes and my pressure is near to impossible to control. Too many meds I pass out because at home it's low, if I walk it jumps up to 200/108. They tried beta blockers but it lowers it too much when I am at rest.
                  Yes I also have this with BP spiking higher and higher then drops. But I am on only 25mg of a beta blocker Atenolol and much of the time it's okay.
                  However, I did have one of my "events" while getting IV Steroids in hospital, which was a concern my doctor had at that time.

                  Jan
                  I believe in miracles~!
                  2004 Benign MS 2008 NOT MS
                  Finally DX: RR MS 02.24.10

                  Comment


                    #54
                    Originally posted by mjan View Post
                    Yes I also have this with BP spiking higher and higher then drops. But I am on only 25mg of a beta blocker Atenolol and much of the time it's okay.
                    However, I did have one of my "events" while getting IV Steroids in hospital, which was a concern my doctor had at that time.

                    Jan
                    Have you ever been on bystolic? he wanted me on that plus 10mg lisinopril and a diuretic which I already take.
                    Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

                    Comment


                      #55
                      Originally posted by Katje View Post
                      Have you ever been on bystolic? he wanted me on that plus 10mg lisinopril and a diuretic which I already take.

                      I do not know of these drugs. I have had sooo many drug interactions/allergic reactions that there are few I can tolerate. But I will be meeting my new Cardiologist and will mention this, so thank you.

                      Are you stable with few to no episodes?

                      Jan
                      I believe in miracles~!
                      2004 Benign MS 2008 NOT MS
                      Finally DX: RR MS 02.24.10

                      Comment


                        #56
                        Originally posted by mjan View Post
                        I do not know of these drugs. I have had sooo many drug interactions/allergic reactions that there are few I can tolerate. But I will be meeting my new Cardiologist and will mention this, so thank you.

                        Are you stable with few to no episodes?

                        Jan
                        I think I am having anteother attack now. My left side is not right. I want to go to Chocago so bad for the HSCT,but I am afraid with my labile blood pressure the treatment will kill me.
                        Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

                        Comment

                        Working...
                        X