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  • justkeepswimming1111
    I have had many weird issues over the past 15 years that could never be explained by doctors yet we're very debilitating to my life. I never would have suspected MS, because I didn't know anything about it really. A friend of mine who knows I've been struggling physically asked me about it, and I just don't know. I'm tired of feeling like a hypochondriac because no issue has ever been resolved by a doctor, but gone away in months or years even on its own. I've had extensive blood work and nothing has come back as abnormal, clear of all diseases. Except for my ANA, which again I have been offered no explanation. It is moderately elevated. I've seen almost every specialist out there for various things and have gotten no where. Yet the issues continue.

    About a month ago i couldn't sleep all night because I had severe burning in my hands and feet. Ive had this a lot over the years but thought it was restless leg syndrome. But this made me question it because it was so painful, and now the pcp wants to see me again. I have painful sensation in my hands and feet always, sometimes the needle feeling but not numb. My arms and legs become wobbly easily with little exertion. I started getting a lot of tingling in other body parts about two years ago. The back of my head, earlobes, upper arms especially. My legs hurt all the time like I've run a marathon. I have had severe fatigue for years. I'm 32. 

    I have begun to suspect it could be Ms...or nothing. I'm afraid to get an MRI. Is this worth it anymore? Do I just hold off unless something goes completely numb or end up physically handicapped? What is a reasonable course of action? I don't know anymore. 

    These have been my attacks:

    extreme fatigue (many years), dizziness (3 months), slightly blurred vision(2 months), eyelid spasms (1.5 years), dark spots like stars in central vision (fleeting), constant urge to pee (1 year), severe constipation (many years), sexual pain (4 years), menstrual changes, difficulty breathing like torso is being compressed (2 years), sore rib muscles (intermittent), twitching that lasts weeks, tinnitus, right side neck/temple pain (years), tingling (intermittent), weakness (intermittent), trigger finger non dominant (2 months), plantar fasciitis (3 months), shoulder burstiris (1 month), knees hyperextension (3 months), cognitive impairment, fog, very poor memory and concentration (debilitating), constantly sore mid and low back feels like spine itself, severe itchy scalp (2 months), vibrating sensations, low/lacking sensation on areas of skin, frequent headaches, occasional migraines. And more.

    I also had 3 episodes in the past year in the night...woke up whole body vibrating and icy wet cold feeling, about to pass out and simultaneously uncontrollably vomit and poop myself and my whole body was going numb could barely make it to the bathroom. Then my whole body felt like it was literally on fire. Like I was poisoned and might die...lasted about ten minutes each time then faded into nothing. No it was not a panic attack...not triggered by anxiety at all.

    No injuries or abnormal experiences triggered any of these and I saw specialists and did testing for everything along the way. No brain scans so far. I know no one can diagnose and I don't expect that! But if I go to pcp and they suggest an MRI is it worth it? If they do nothing do I accept it and wait it out? I'm nervous about what I'm supposed to do.

    Thanks for your time.
  • MS_Navigators
    Hi Justkeepswimming1111,

    I sure hope you get some answers soon!  As to your question about diagnosis being worth it, as with most conditions early detection and treatment are encouraged.  The medications that are used to treat MS can slow down progression, and reduce relapse rates and are recommended to start as early as possible if that is the path you and your doctor feel is best.

    Please continue to come back and update us on your journey!

    If you'd like to look for neurologists with MS experience, you can check our search tool here:
    Find Doctors and Resources

    Jess, MS Navigator
  • justkeepswimming1111
    This is helpful to know. Thank you! 
  • maria1
    Hey just...., do you want some relief? Ignorance is not bliss, it lets the imagination think the worst. And if there is a solution 'free' time is being missed, the timewhen there is no pain and a little bit of fun in life. Or do you think you ought to suffer for ever?

    So, if it is ms, there are options for relief, if it is not ms there may be a lead of another route to take. At 30 you have a 'few' lol good years left for fun pleasure good times and happiness, the things that make life a joy, wanna give that up?

    So, whatever it is, there may be some things you will not be able to do, but you will have a better picture of what your limits are, as it says at the bottom of the cover page, Knowledge IS Power. The more you know the better your life will be, and you WILL have the power to make your life better, why would you want to pass that up?
  • justkeepswimming1111
    I would love a single day free of pain! And free of struggling against it mentally and physically! If it were possible, it would be worth it. Thank you for your encouragement. 
  • ErinNicole
    If you wants clarity and the tools to manage these symptoms, look into it.
    It’s a devastating diagnosis and medication doesn’t “fix it”.
    BUT, because of physical and occupational therapy targeting the correct thing I can get up and down from the floor using a chair, I can walk over my kids LEGOS without falling and I don’t get as fatigued.
    Before you get a spinal tap or lumbar puncture, get tested for lupus. Lupus has very similar symptoms.
    I hope you get relief soon
  • justkeepswimming1111
    I do want clarity and to get control over my body and life! I'm so glad to hear that you have found therapy to be helpful... I'm a mom too ☺️ being a mom is so tough without any physical problems... You are inspiring, you found a way to work with your illness! Even though it must be so difficult.

    I went to a rheumatologist after the ana blood test and he didn't seem to believe that I had lupus, but I know there are a lot of symptoms that overlap and difficulty in diagnosing that too. I realize I'm in that awkward gray area...it's confusing and frustrating. And my family probably thinks I'm just a crazy person...it stinks. 

    Thank you for replying, may you be well!