Announcement

Collapse
No announcement yet.

Oh hey!

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

    Oh hey!

    Hi

    So I have just been diagnosed with MS. Had a little trip to the hospital but the Dr is pretty sure its not progressive. Anyways I've yet to see a neurologist since insurance is an issue and am dealing with it without medication for at least the next month. Any tips for getting back to 100% without meds? I understand that meds are extremely helpful I just need some advice on getting through until my appointment.

    Thanks guys!

    #2
    more info?

    HI,

    So, what 'symptom' or issue are you having? I'd say that would be helpful to know.

    While I don't positively know it will help you, my suggestion is to take at least 5,000 iu of Vitam D (D3) a day. I would recommend taking an amount in the 5,000 iu to 10,000 iu range daily.

    Good book to read to learn more about MS: MS for Dummies

    Even once you see the neuro, I'd plan for it likely being another 2 to 4 (maybe even 6) weeks after that before you actually begin whatever medicine you and he/she may choose. Do what you can now on your own to read up / learn about the medication options.

    Paleo type diet is recommended by many. Check out Wahls Protocol.
    RRMS Dx: 3/23/15
    (Optic Neuritis Dx 2/27/15; Feb/2014 right leg numbness--at the time diagnosed as Sciatica, but probably first episode)
    Started Tysabri 5/22/15: (Infusions: 5/22/15, 6/18/15, 7/16/15)

    Comment


      #3
      More info

      Thanks for the reply! I guess I should have explained better in the first post. Some of the symptoms that I've been having are headaches like all day, fatigue, soreness in muscles, and even some issues with my vision on computer screens. I am taking 4000mg of vitamin D daily but I'm wondering if I could even bump that up to more a day or if it would work better to spread it out over the course of the day?

      I've found that coffee in the morning kinda helps but it never seems to last very long. Some websites suggest vitamin C as well but then others say not to take it.

      I guess I'm just new enough at this that I have no idea what I'm doing. Haha.

      Comment


        #4
        Hello WindupBird and welcome to MSWorld.

        If you haven't seen a Neurologist how did you receive your diagnosis, what testing and have other causes been ruled out?

        I ask because there is a diagnostic criteria for Multiple Sclerosis, The revised McDonald Criteria:
        http://www.nationalmssociety.org/Nat...osis-of-MS.pdf

        Part of that criteria is to rule out other conditions that can cause similar symptoms as MS.
        Information about other conditions:
        http://www.nationalmssociety.org/Sym...ns-to-Rule-Out

        Information about diagnosing MS:
        http://www.nationalmssociety.org/Sym.../Diagnosing-MS

        Your vision issue should be addressed by an eye specialist (Optometrist or Ophthalmologist) as your vision is their specialty and not the specialty of a Neurologist.

        Maybe you have Multiple Sclerosis, but maybe you don't. It is best to wait until you see the Neurologist.

        Best wishes.
        Diagnosed 1984
        “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

        Comment


          #5
          Originally posted by SNOOPY View Post
          Hello WindupBird and welcome to MSWorld.

          If you haven't seen a Neurologist how did you receive your diagnosis, what testing and have other causes been ruled out?

          I ask because there is a diagnostic criteria for Multiple Sclerosis, The revised McDonald Criteria:
          http://www.nationalmssociety.org/Nat...osis-of-MS.pdf

          Part of that criteria is to rule out other conditions that can cause similar symptoms as MS.
          Information about other conditions:
          http://www.nationalmssociety.org/Sym...ns-to-Rule-Out

          Information about diagnosing MS:
          http://www.nationalmssociety.org/Sym.../Diagnosing-MS

          Your vision issue should be addressed by an eye specialist (Optometrist or Ophthalmologist) as your vision is their specialty and not the specialty of a Neurologist.

          Maybe you have Multiple Sclerosis, but maybe you don't. It is best to wait until you see the Neurologist.

          Best wishes.

          ditto!!!

          B12 may help with fatigue issues, I am not advocating doing something with out your doctor telling you todo. Have you seen your GP about any of this he/she may have a good answer for you. I hope you have some good luck solving your problems. Keep us updated lease
          hunterd/HuntOP/Dave
          volunteer
          MS World
          hunterd@msworld.org
          PPMS DX 2001

          "ADAPT AND OVERCOME" - MY COUSIN

          Comment


            #6
            As hunterd suggested, really it is your neurologist that you do need to see and get clarification.

            I know how terrible I felt when I had been diagnosed with MS, but not yet started on a medication. I just felt like I wanted to be able to "DO" something. I gather that is where you are coming from as well.

            What I suggested is the best advice I have for you to 'tide you over' until seeing the neurologist. Most people tend to be on the deficient side with Vitamin D. If you live in a cold place where you haven't been exposed to the sun too much all winter, you are probably on the low side.

            That being said I personally would say take 4,000 iu twice a day. (You should also get your blood checked to see what your vitamin D level actually is. You'll probably get that done and many other tests through bloodwork when you see the neurologist).
            RRMS Dx: 3/23/15
            (Optic Neuritis Dx 2/27/15; Feb/2014 right leg numbness--at the time diagnosed as Sciatica, but probably first episode)
            Started Tysabri 5/22/15: (Infusions: 5/22/15, 6/18/15, 7/16/15)

            Comment


              #7
              Neurologist

              I mean I was seen by a neurologist when I was admitted to the ER. He said that if it looks like it, smells like it, feels like it, etc. Then it's probably MS. They did 2 MRIs while I was there. I am still waiting for the lumbar puncture results but the Dr's seemed pretty sure.

              I have an appointment scheduled with a neurologist in April ish but my main concern is being proactive on my end with ho email remedies that'll help in the mean time.


              This is all new to me and I've never actually known anyone with MS before to ask about it.

              Sorry if this was a little rambley.

              Comment


                #8
                Hi WindupBird,
                Welcome to the site. I think that you ae getting ahead of yourself in a few ways.
                First, do not trust the internet to confirm anything about a diagnosis. You can't be diagnosed with MS if you haven't done a battery of tests like several MRI's and nerve conduction, etc. There are 400 mimics of MS and it is possible that you have one of those.
                Second, the most important doctor's opinion is the neurologist's opinion. You should get an MS specialist's and you should ask the neuro if that is their 'specialty' ! I CAN'T STRESS THAT POINT MORE STRONGLY ! It is a recognized sub specialty that all neurologists do not earn !
                At every doctor's appointment, you should tell the doctor every medicine and supplement that you take. There is a case to be made for taking vitamin C, B-12 and vitamin D. But you should get your blood levels tested. Do not believe that you have 'ok' levels . Get the actual numbers from the labs . Good luck and I hope that you find out that you don't have MS.

                Comment


                  #9
                  Originally posted by SNOOPY View Post
                  Hello WindupBird and welcome to MSWorld.

                  If you haven't seen a Neurologist how did you receive your diagnosis, what testing and have other causes been ruled out?

                  I ask because there is a diagnostic criteria for Multiple Sclerosis, The revised McDonald Criteria:
                  http://www.nationalmssociety.org/Nat...osis-of-MS.pdf

                  Part of that criteria is to rule out other conditions that can cause similar symptoms as MS.
                  Information about other conditions:
                  http://www.nationalmssociety.org/Sym...ns-to-Rule-Out

                  Information about diagnosing MS:
                  http://www.nationalmssociety.org/Sym.../Diagnosing-MS

                  Your vision issue should be addressed by an eye specialist (Optometrist or Ophthalmologist) as your vision is their specialty and not the specialty of a Neurologist.

                  Maybe you have Multiple Sclerosis, but maybe you don't. It is best to wait until you see the Neurologist.

                  Best wishes.
                  Snoopy, I just wanted to let you know that I appreciate your post.

                  Not officially diagnosed due to non-MS-specific spots on MRIs, but the neurologists all agree it's MS.
                  Frustrated. January 2019: finally saw an MS specialist worth seeing. Maybe we'll get to the bottom of this.
                  EDSS of 5.5, sometimes 6.0

                  Comment


                    #10
                    email contact?

                    Hi again WindupBird:
                    I don't think you have listed your email in your profile for people to contact you at. You can't post it in the threads in the forum. (Or I don't think you can anyway).
                    RRMS Dx: 3/23/15
                    (Optic Neuritis Dx 2/27/15; Feb/2014 right leg numbness--at the time diagnosed as Sciatica, but probably first episode)
                    Started Tysabri 5/22/15: (Infusions: 5/22/15, 6/18/15, 7/16/15)

                    Comment

                    Working...
                    X