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    Looking for Guidance ... how/when did you know or find out?

    Hello! I'm looking for guidance and hoping it's here. How did you find out or what led to the diagnosis of MS? I've been experiencing a slew of issues that been ongoing for years and only increasing as time goes on or becoming significantly worse. Sometimes the issues come and go in spurts for a period of time and then I may have some good days. I don't want to sound like I'm crazy or just trying to put a label on it but I'm beginning to wonder if it's just coincidence and aging (I'm 36) or if there is more to my health and MS has been on my mind just not sure how to approach it. The following are the ongoing issues I've been experiencing and I'm wondering if these are all MS related:
    - Migraines (going on 19 years), with some migraines i may experience lip numbness. My migraines typically last 3 days at a time and i spend about 12 days a month with headache/migraine.
    - Lower Back Pain (sometimes so bad it hurts to bend over or take stairs, even lay down)
    - left hip pain when laying down
    - left leg pain like pinch nerve
    - left knee stiff and painful (2 years of on/off for weeks on end of painful to bend and use)
    - pins and needles feeling in hands and feet on occasion or if i sit too long in a chair
    - dizzy when bending over 50% of time
    - right eye floaters on occasion
    - fatigue
    - no libido
    - frequent urination
    - disturbed sleep
    - irregular bleeding (i shouldn't have period at all with the BCP i'm on)
    - blurry vision in right eye (this is most recent occurrence)

    This is the honest truth about the list of ongoing issues I have on regular basis. I'm getting ready to go to a different neurologist in June and wanted to approach the MS subject but came here first to get some feedback first and appreciate everyone's time and opinions. Thank you!

    #2
    Hello AP122414 and welcome to MSWorld.

    I'm getting ready to go to a different neurologist in June
    What did the other Neurologist have to say about your symptoms and what testing did you have done?

    - left knee stiff and painful (2 years of on/off for weeks on end of painful to bend and use)
    Have you seen an Orthopedist? This could possibly be due to Arthritis.

    - right eye floaters on occasion
    - blurry vision in right eye (this is most recent occurrence)
    Have you been to an Ophthalmologist? Your vision issues would best be addressed by an eye specialist (Ophthalmologist). Typically floaters are of no concern, the majority of people have floaters but don't notice them. Information about Floaters: https://www.allaboutvision.com/condi...potsfloats.htm

    - no libido
    - irregular bleeding (i shouldn't have period at all with the BCP i'm on)
    I would suggest seeing your ob-gyn for these issues.

    - Lower Back Pain (sometimes so bad it hurts to bend over or take stairs, even lay down)
    - left hip pain when laying down
    - left leg pain like pinch nerve
    You might have back problems. Your Primary Care Physician can evaluate and do testing.

    Multiple Sclerosis is not diagnosed based on symptoms alone. There is no symptom(s) exclusive to this disease. All other possible causes for a person's symptoms need to be ruled out and testing done for MS needs to show an indication that MS is a possibility.

    Diagnosing MS: https://www.nationalmssociety.org/Sy.../Diagnosing-MS
    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


      #3
      Hello Snoopy!

      Thank you for reaching out.

      The 2 neuros I've been going to are in the same office and have focused on my migraines and adjusting the medications to prevent and treat at onset. The ortho I went to when i first had the knee trouble stated there was a cyst and fluid build up, no resolution with cortisone and therapy, second ortho said patella maltracking with more therapy. After a year the popping stopped but the stiffness and pain still comes and goes. My eye issues could be related to my migraines, the floaters seem to be consistent with when a migraine is starting but the blurred vision was new and not with a migraine. And I have another appt with OB in June to address possibility of issue with pills...

      The reason i listed out everything was because I was wondering how others came to the point of putting it all together to even consider if everything is somehow related. Maybe I just happen to have a lot of random problems but at what point do you ask are all these issues pointing to something else? I don't want to be someone that "google diagnoses" and I truly wanted to understand if MS was something I should be inquiring about going into a new clinic/neurologist.

      Again thank you for your time.

      Comment


        #4
        Hi again AP122414

        Originally posted by AP122414 View Post
        The reason i listed out everything was because I was wondering how others came to the point of putting it all together to even consider if everything is somehow related.
        Again thank you for your time.
        MS affects the Central Nervous System(CNS) which includes the brain, spinal cord, and optic nerves.

        MS does not affect menstrual cycles or birth control. MS does not cause floaters. I have dealt with floaters since I was a kid. I learned if I focused on them I would notice them more and so, it became a game. To this day I still see floaters but simply ignore them Blurred vision can have a host of causes; dry eyes, eye strain and eye fatigue, or simply a need for glasses or a change in prescription. You might give gel eye drops a try and see if that helps. When you first put them in your eyes will be blurry for a short time.

        I like Systane Gel Drops.

        The cyst and fluid build up in the knee isn't something MS causes. You might want to do a follow up with the Orthopedist if things get worse. I have knee problems but it has nothing to do with MS.

        - pins and needles feeling in hands and feet on occasion or if i sit too long in a chair
        Sitting too long in certain positions can cause this to happen for just about anyone. If you get up and move around do the pins and needles go away? If it is caused by MS it doesn't matter what we do those sensations are there until the decides to shut them off or we just learn to ignore the sensations.
        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
          To answer your question more directly:

          I went to my Primary Care Physician for symptoms that were scaring the crap out of me. After examination by my PCP; he said he could not help me and handed me a referral to a Neurologist. Neurological exam/evaluation, a multitude of testing and then a diagnosis. That's how I found out I had Multiple Sclerosis. Start to finish took 3 months.

          I had absolutely no idea what I was being tested for (I was young), although I did find out a brain tumor was one of the first things being considered after my Neurologist called me back in for a repeat MRI and assuring me there was no tumor

          You are free to ask your Neurologist about testing for MS as no one, including myself, can tell you if you do or do not have MS.

          Take care.
          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


            #6
            Hello AP

            My experience was similar to SNOOPY's.

            I went to PCP with symptoms, and then was referred to a Neurologist for neurological exam.

            It was the neurological exam that revealed objective signs that were suggestive of MS, or other neurological conditions.

            So then lab work (blood testing) and MRI's (brain and cervical cord) were ordered. The possible diagnoses listed on my MRI referral were MS, Stroke, and Brain Tumor.

            Finally, a Lumbar Puncture to analyze the cerebral spinal fluid was done.

            MS was diagnosed, and then I was referred to an MS Center for confirmation of PPMS as the 'type' of MS.

            The neuros at the MS Center told me that I was easy to diagnose - guess I was just lucky.

            If interested, here are the objective signs of neurological involvement, that may be found during a neurological exam:

            https://multiplesclerosis.net/diagno...ological-exam/

            Take care
            PPMS for 26 years (dx 1998)
            ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

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