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    Where do I start?

    I'm headed to my family doctor soon to hopefully get started on figuring out what is going on with my body. I write this post with hopes of helping others and seeing if anything sounds familiar to those on this board.

    A few years ago: I started having strange tingling spots on various places around my head that comes and goes at random.

    Around the beginning of this year: my nose and mouth area started itching/tingling and I noticed myself scratching it often and even waking up in the night to find myself rubbing my nose across my pillow.

    June: I was outside visiting with a friend in 100 degree weather for two hours and the itching and tingling on my nose became severe, almost unbearable. Scratching it does nothing. Allergy medicine does nothing. (As a side note, I have spring allergies and this itching feels completely different than allergies. It also is not on the surface of the skin, but deep inside.) As I got in my vehicle to drive home and blasted the A/C, it slowly began to fade in intensity.

    July: I began having moderate tingling in both arms that spread to both legs after about two weeks. It woke me up multiple times each night and felt like an elephant was sitting on each limb. I saw my chiropractor and was adjusted, which improved the tingling some, but it ranges in intensity anyway, so not sure it helped.

    August: My nose itching was moderately bad one morning, then I spent a couple of hours watching a football game (98 degrees out). The itching nose became severe again, unbearable, and I ended up leaving the game early and putting ice on my face when I got home, which did help some. I also had double vision at this game that lasted for about 10 min. then went away.

    Also August: The tingling in my arms and legs spread to my hips, chest, and entire face. It ranges in intensity everyday, but never fully goes away. Had trouble sleeping. Saw chiropractor again. This time no improvement.

    September: Sudden burning pain in right eye which grew in intensity. Lasted around 10 min. and went away completely over the next two days.

    Any insights would be wonderful. My chiropractor suggested it might be MS. My sister suggested it might be Neurofibromatosis (she is dx with). My question is, do I need to ask for certain tests? Or will the family doc know what to do?

    #2
    Hi EAT227

    I don't have any good insights for you, except for you to document your symptoms and take this documentation with you to your doctor - much like you have written in your post.

    Originally posted by EAT227 View Post
    My question is, do I need to ask for certain tests? Or will the family doc know what to do?
    If your family doctor has an idea of what could be causing your symptoms, he may order some tests.

    If your doctor suspects that there is neurological involvement, he will most likely refer you to a neurologist for testing. That is what my primary physician did at my initial appointment with him. My symptoms and clinical exam showed neurological involvement.

    The neurologist performed a very thorough clinical neurological exam, and then ordered many tests including bloodwork, urinalysis, MRI's, neuro ophthalmologist exam, and spinal tap.

    Wishing you the best.

    Take Care
    Last edited by KoKo; 09-20-2017, 07:59 AM.
    PPMS for 26 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      Originally posted by KoKo View Post
      Hi EAT227

      I don't have any good insights for you, except for you to document your symptoms and take this documentation with you to your doctor - much like you have written in your post.



      If your family doctor has an idea of what could be causing your symptoms, he may order some tests.

      If your doctor suspects that there is neurological involvement, he will most likely refer you to a neurologist for testing. That is what my primary physician did at my initial appointment with him. My symptoms and clinical exam showed neurological involvement.


      The neurologist performed a very thorough clinical neurological exam, and then ordered many tests including bloodwork, urinalysis, MRI's, neuro ophthalmologist exam, and spinal tap.

      Wishing you the best.

      Take Care
      This. I went to my primary care doc with my symptoms (numbness on skin, no feeling in fingers, L'Hermittes) who ordered ALL the blood work and referred to neuro. My blood work all came back normal (save my Vt D which was super low, so she started me on a supplement while I waited for my neuro appointment). Neuro did a very thorough exam, and was immediately concerned about MS, though acknowledged it could be other things, but knew based on the L'hermittes at least, that there was some inflammation of some sort in my spinal cord. Sent me for the c-spine MRI, which showed a lesion, and then she sent for the brain MRI, which also showed lesions, and then went for the Lumbar Puncture, which showed all the corresponding CNS inflammation results, which all of this combined (clinical presentation, radiological and LP results) resulted in my MS dx. Part of the dx of MS is the a diagnosis by ruling out other things which could cause the symptoms.

      Good luck!

      Comment


        #4
        Thank you, Koko and LostMyMonkeys! Your comments were very helpful to me, in knowing what to expect.

        I saw my family doctor and he did a thorough neurological exam. I had a bit of trouble with the touch nose, touch finger test and I kept falling to the left on the balance test, even when standing on two feet. I also told him about my sister having neurofibromatosis. So . . .

        I had my blood drawn right after my appointment and the doctor also ordered two MRI's: one of the brain and one of the spine. I am now waiting for the hospital to call me to schedule the MRI's.

        I go back to my family doctor on October 3rd to discuss the results of the blood work and MRI's.

        Comment


          #5
          Sounds like you have a thorough primary care physician. Most just refer to a neurologist. Once you get the results, you may want a consult with a neuro anyway. They can review the bloodwork ordered for completeness and review your MRIs.

          MS doesn't usually present bilaterally initially. Not saying it can't, but not the usual presentation.

          Let us know how you make out at your doctor visit.
          Kathy
          DX 01/06, currently on Tysabri

          Comment


            #6
            Hi EAT227,
            After reading your post, I suggest that you have a complete blood count (CBC) with a vitamin D test. Do yourself a favor and make sure you get the ACTUAL VALUES ! Anything below 25 is too low (IMO)! I wish you the best on your journey. Good luck

            Comment


              #7
              Originally posted by pennstater View Post
              Sounds like you have a thorough primary care physician. Most just refer to a neurologist. Once you get the results, you may want a consult with a neuro anyway. They can review the bloodwork ordered for completeness and review your MRIs.

              MS doesn't usually present bilaterally initially. Not saying it can't, but not the usual presentation.

              Let us know how you make out at your doctor visit.

              Good to know about the bilateral presentation! And thank you for the advice about consulting a neuro! I'm getting nervous and anxious about the MRI on Monday.

              Comment


                #8
                Originally posted by JerryD View Post
                Hi EAT227,
                After reading your post, I suggest that you have a complete blood count (CBC) with a vitamin D test. Do yourself a favor and make sure you get the ACTUAL VALUES ! Anything below 25 is too low (IMO)! I wish you the best on your journey. Good luck

                Thank you. This is very helpful.

                Comment


                  #9
                  *Update*

                  Had brain and c-spine MRI. Went back to family doc for results.

                  Clean brain MRI.
                  Very slight vitamin D deficiency. Will re-do blook work in 3 months.
                  3 very slight herniated disks in neck (not touching the spinal cord yet).

                  Doc does not think either of these things is causing my syptoms (which continue to get worse: facial pain/numbness, burning pain on heels, calves and thighs.)

                  I'm being referred to a neurologist for idiopathic peripheral neuropathy and trigeminal neuralgia. Not sure this is MS, because of clean MRI, but because I'm 35 (and not 55/65) there is a chance this is early stages of MS.

                  Hope this info. helps others in some way. I'll be back after neuro appointment.

                  Comment


                    #10
                    Hi EAT227,

                    because I'm 35 (and not 55/65) there is a chance this is early stages of MS.
                    Just a FYI

                    There is no age parameters for MS.

                    MS was once known as a "young person's disease" diagnosed between the ages of 20 and 40, but that is no longer the case. Children are diagnosed with MS and the reason their are pediatric MS Centers as well as those over 50, and every age in between.

                    Best wishes on your upcoming Neurology appointment.
                    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


                      #11
                      Originally posted by SNOOPY View Post
                      Hi EAT227,



                      Just a FYI

                      There is no age parameters for MS..
                      Thank you for alerting me to this! I'm just repeating what I've heard from doctors, friends, and family. They are all of the mind that it is only 20-40 year olds. 😁

                      Comment


                        #12
                        If you want to know more about age and MS please read the links below. Maybe you could educate those that have told you it's only ages 20-40

                        From The National Multiple Sclerosis Society:
                        Most people are diagnosed between the ages of 20 and 50, although individuals as young as 2 and as old as 75 have developed it.
                        https://www.nationalmssociety.org/Wh...on-Who-gets-MS
                        Pediatric MS:

                        https://www.nationalmssociety.org/Wh...S/Pediatric-MS

                        https://www.nationalmssociety.org/Re...upport-Network
                        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

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