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    When does it let up?

    Hey Folks,
    I hope everyone's well. I'm glad to have found a place to learn from others like myself. My case started under worker's comp as a shoulder injury and the case isn't closed as yet, so none of my nuero symptoms can be addressed/diagnosed until the case is closed. I'm not sure if my case is MS but my objective reading brought me here. Here's a brief version of my story...

    My condition started at work with intermittent R wrist pain for 2 weeks which ended with the entire R arm feeling like the crushing of a large appliance. It was termed 'repetitive use' injury since my job requires a lot of R hand/arm work. 2-3months later, pain referred to my neck and L arm. This all started in Feb 2019, I eventually started with acupuncture and NSAIDS. More specifically, the combo of gabapentin and flexeril destroyed my stomach by Jan 2020 which brought horrid Gerd/GI upset (slept at 60degree angle, had all kinds of barium swallows and GI ultrasound - sx subsided for most part.) I had 6 PRP (Platelet Replacement something - cognition is atrocious again) to neck and arm with only short term relief. Then onto upper cervical Chiro, which provided 30-70% oscillating relief which saved my life. It felt like I was being beheaded with a dull car - the pain was maddening so I thank God for that lady's work. I saw an chiropractic neurologist who attempted to help also but mostly I learned about Near Infrared light and how it helps with cognition/brainfog. He had amazing tools that I would feel like myself for a day after treatment. I'd also done Thai massage, acupuncture and cognitive behavior/counseling over this time.

    I kept up reading about the neurological possibilities but was treating myself symptomatically. In July, I had a laugh that wasn't mine - I learned it was psuedobulbar affect. That explained the previous months' recurring overly emotional states I would get into periodically (writing a Christmas card, anything touch - made me cry easily) At appointments, if I sat bored in a waiting area or patient room I'd laugh like it was an accumulation of every joke I'd ever heard. I loved the endorphin release!! Still do. I prayed for God's healing hand and he'd sent it to me in this form. I can still cry, but I try to get myself out of those situations quickly if I can - they're not fun. However, I sometimes go in and out of laughter and crying too, it's a mind warp but my wife is disturbed most by it as she's kinda on the sensitive side. I was a medic in the Navy so I'm used to dealing with humanity. I haven't had proper meds to help with that, so I've been using self-hypnosis unsuccessfully LOL. I try to let people know in advance of the condition, so they're not offended and I can enjoy the endorphin release - it's all I got, can't really exercise like I used to. If anyone, has questions or tips in coping with PBA please reach out. I'm an open book and love to learn and teach.

    Since June, I've felt my symptoms worsening; more general body weakness, widespread and random body aches/spasms throughout my chest, abdomen and even arms or legs when I overuse them, dx w SIBO in Oct, periodic metallic taste in my mouth at night, Hyper sweating of palms and soles of feet - gone now, horrid cognition (since January when GI pains started), headaches. Body weakness (predominantly in all 4 limbs simultaneously) got to a point where I couldn't get out of bed - remedied that with a mitochondrial support supplement but its' benefits waned after 4 weeks. I'm back to using kratom and/or cannabis to get out of bed. I try to hypnotize myself to liken the limb pain to having run/exercised/climbed as that's what it feels like but is challenging to keep up with but not stopping. I started physical therapy for my shoulder a month ago and that's moving ahead well but slowly. Feels great to get more range of motion but paying for it in pain. I'm beginning to work with an Herbalist now to combat the limb pain/weakness. If anyone has used herbal/botanicals, please share your experience.

    I know that's a whole mess there for an intro. Despite fighting back with ferocity while living with God, being humble and trying anything for relief, having mostly good PBA episodes, I still feel down sometimes. Like "what's the use" and have negative thoughts as I feel alone and not knowing anyone personally who has the condition or similar that I can confide in. Thanks for having me and helping me, I hope I can be of benefit to someone in need at some point. God bless and let's stay strong together.
    Thanks for reading.




    #2
    Hey there.....great user name.

    Did i miss it or are you seeing a neurologist? Any imaging of your brain or spine performed? Lumbar puncture?

    Go Navy.
    The future depends on what you do today.- Gandhi

    Comment


      #3
      Originally posted by Boudreaux View Post
      Hey there.....great user name.

      Did i miss it or are you seeing a neurologist? Any imaging of your brain or spine performed? Lumbar puncture?

      Go Navy.
      Yes brother, like wise on the name. I’ve had countless psuedonymns derived from my last name while on active duty. Pure comedy there lol.

      I forgot to include MRI info; I had 2 brain MRIs 4months apart, both benign. (Also, had neck, brachial plexus, shoulder and elbow MRIs - all benign.) I can only imagine brain lesions may not be visible yet? Maybe another neurological condition? When all this sx chasing gets old I try to refocus on that resilient warrior mentality from active duty. I’m not stubborn enough to ignore the symptoms tho.

      More info I didn’t mention: I do in fact have a referral to Neuro but they’re booked thru end of this year and she hasn’t opened up her 2021 schedule yet, so no telling when I’ll get in there and what shape I’ll be in when I do. Pain has been horrid from the start so I haven’t been able to work since this entertainment started. One day at a time mostly...Thx for responding!

      Comment


        #4
        Hi boodreaux.

        Originally posted by Boodreaux View Post
        I eventually started with acupuncture and NSAIDS. More specifically, the combo of gabapentin and flexeril destroyed my stomach by Jan 2020 which brought horrid Gerd/GI upset
        Gabapentin and Flexeril are muscle relaxers not NSAIDS.

        I kept up reading about the neurological possibilities but was treating myself symptomatically
        Over the counter remedies such as Kratom are not necessarily safe and can have side effects. I have no idea, nor do I need to know, what different over the counter things you are taking or prescrption medication, but it is possible for them to be causing some or all of your symptoms including mental health issues (crying/laughing randomly).

        There is a diagnostic criteria for MS (The Revised McDonald Criteria). This criteria relies heavily on MRI evidence. There are many conditions that have similar symptoms as those seen in MS.

        Best wishes on your diagnostic journey.





        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
          A correction I would like to make; Gabapentin is used for many things. It can be helpful for Neuropathic pain, anxiety, muscle spasms, and more but it is not a NSAID.
          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
            Originally posted by SNOOPY View Post
            Hi boodreaux.



            Gabapentin and Flexeril are muscle relaxers not NSAIDS.



            Over the counter remedies such as Kratom are not necessarily safe and can have side effects. I have no idea, nor do I need to know, what different over the counter things you are taking or prescrption medication, but it is possible for them to be causing some or all of your symptoms including mental health issues (crying/laughing randomly).

            There is a diagnostic criteria for MS (The Revised McDonald Criteria). This criteria relies heavily on MRI evidence. There are many conditions that have similar symptoms as those seen in MS.

            Best wishes on your diagnostic journey.




            I wish I could attribute my sx to kratom or something else, I've tried but I track what I do in somewhat of a scientific way with pain logs, meds etc. (I'm a laboratorian) I had PBA sx long before I'd started kratom. My sx are entirely out of control and I've been a health nut almost my entire life. I eat n exercise cause I love it and makes me feel good. In recent past, I used to say to friends, 'I'm the sickest health nut you'll ever meet' - tragically kinda makes sense, but I'm fighting so that doesn't happen for me.

            Thanks for responding, I listen to every voice and leave no stone unturned. I think I'm kinda panicked because I'm almost medically unsupervised w work comp thing. I'm hoping to get insight on managing the symptoms, so I'm reading there.

            I'll read into the MS criteria, thx for pointing me there! I'm trying to learn as much as I can when I have my faculties.

            Love the name too dude! It's timeless, cute, awesome...haha Bless you brother and thanks for the welcome, peace!

            Comment


              #7
              Welcome! I'm glad you found us.

              My advice is simply to take care of yourself. Eat healthy, exercise moderately, practice self care (meditation, stress management, pampering yourself, etc), listen to your doctors, consider a combination of traditional medicine and complementary meds and strategies.
              ~ Faith
              MSWorld Volunteer -- Moderator since JUN2012
              (now a Mimibug)

              Symptoms began in JAN02
              - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
              - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
              .

              - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
              - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

              Comment


                #8
                Originally posted by Mamabug View Post
                Welcome! I'm glad you found us.

                My advice is simply to take care of yourself. Eat healthy, exercise moderately, practice self care (meditation, stress management, pampering yourself, etc), listen to your doctors, consider a combination of traditional medicine and complementary meds and strategies.
                Thank you for the welcome and advice. The hardest part at the moment is adapting my pace to life as I’ve always been active and higher energy. I’ve found if I’m not energy conscious fatigue runs me over but I’m working on adopting a slower pace and mindset of overcoming. A TCM Doc recommended books by Joe Dispenza and Joseph Murphy and that was powerful. Thanks again kind lady!

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