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    • #18432
      Ed Tobias

      I first realized something was wrong when my hand, suddenly, wasn’t strong enough to squeeze the toothpaste tube. Then I realized that my legs became tired sooner than they should and I sometimes felt “spacy.”

      What were your first symptoms?


    • #18456
      J Howell

      Hey there. I was just diagnosed about a month or so ago, but this exacerbation seems to have started in early July. The symptoms initially were some neuropathy-like numbness and tingling in my right hand.

      Even though my brother was diagnosed with MS almost two decades ago, I wasn’t particularly fearful- I’ve had some issues related to repetitive-motion injury and car accidents that resulted in pinched nerves before, always easily solved by a few chiropractic visits and some stretching exercises. I had a horrible MS scare in 2009 that turned out to be nothing more than I lifted too heavy an item with bad form and threw my back out. I switched jobs about a year ago, and after being mostly on my feet all day for 17 years, I chalked these issues up to having become lax in my stretching routine and not keeping mindful of my posture and desk ergonomics.

      After a couple of days, the tingling became worse and was accompanied by an uncontrollable itch across my right chest, shoulders, and then my face. It woke me often- I didn’t get a proper night’s sleep for weeks. I made a chiro appointment immediately. When that didn’t do much (it helped, but not enough, not like it had in the past) I tried adjustments and dry needling. That also had some small benefit, but was not as effective as it should have been. I went to urgent care, to rule out shingles. The practitioner prescribed some flexeril and naproxen, which helped a little. Maybe a month into treatments that were only minimally effective, my chiropractor referred me for MRIs, and it was apparent that I had some type of demyelinating disorder going on. I still wasn’t convinced it was MS- I knew that was certainly a possibility, but I also have been in a position to have been possibly infected with Lyme as well.

      Between that first MRI and getting to a neurologist a few weeks later, the spasticity in my arm and legs became worse, my feet became largely numb, my gait changed noticeably, and the numbness in my hand was bad enough that it had almost completely kept me from playing an instrument at all- a very, very big problem for me. That was about a month, maybe six weeks ago. Since then baclofen, vitamin supplements, and OTCs for inflammation and antihistamines for itch have done a lot. CBD has helped immensely. Most of all, a round of Solumedrol infusions helped significantly. I was walking with a cane two weeks ago. Now my gait is a little wonky but barely noticeable to people who don’t know me. My hand is still not 100%, but I can play instruments again, though my fingerpicking on guitar is still pretty bad. Iim still within the halflife of the Solumedrol, though, and my first Fingolimod dose is next week. I feel pretty optimistic that meds and PT will do me a lot of good. Compared to the symptoms my brother had when he was first diagnosed, I feel like I’m getting off relatively easy.

      Now that I know I have MS, it’s hard not to wonder how many little odd things may have been related to demyelination as long as 20+ years ago. Especially a particularly bad but brief, transient IBD-like illness in 2000. I suspect the lesions just finally became bad enough to be problematic recently, but who really knows?


    • #20701


      The last few decades of my life have been a slog to get proper diagnosis & treatment for a number of chronic issues before this latest bit.

      For me, I woke up one morning to the shock of feeling like I had peed in my sleep & also got lidocaine shots in my groin! As I got up, I found the soles of my feet were giving me conflicting feelings of numbness/tingling, standing on brush bristles & being rounded, not flat! Balance was very tricky. The muscle spasticity in my legs make me waddle stiff-kneed like a penguin.

      Since that morning, I’ve struggled with constipation for the first time in my life. Now bladder issues. Now more difficulty focusing my one good eye.

      — TMI below—

      (lifelong mood disorders of moderate to severe with ACE; living with HepC for decades before finally getting access to treatment [Harvoni]; major surgery in adulthood to correct 2 congenital heart defects)

      And since the end of last August, extreme MS symptoms. I may have had precursor episodes, but it was written off as either “in my head” or hypochondria by the churn of clinic Dr.s

      Since then,  it’s progressed to arms, chest, neck & face & is moreso on my left side with noticeable weakening.

      Getting diagnosed has taken 7 mos.

      It occurred during high fire season along with escalating Covid-19 here in Northern California. Very high stress besides having my body flip out. Living N of the Bay Area has not been a plus in the regard of access to care.

      Like many others, I’ve had various oddities which were either ignored or written off to “in my head” or menopause – like sudden adrenaline rushes were put off to panic attacks…panic attacks w/out obvious triggers (I do have PTSD etc) & flushing (menopause).

      Right now I’m grappling with the logistical issues with access to care & getting better info from current Dr. to make plans for commuting many miles away for best care after my partner & I get through the vaccine process.

      • #20715
        Ed Tobias

        Hi J,

        Thanks for sharing all that and I’m glad that your treatments are helping. I found that PT can be particularly helpful but it was medications that delayed the progression of my disease. As I wrote at the start of this thread, my very first symptom was being unable to squeeze a tube of toothpaste with my left hand. But, after my initial treatment (40+ years ago) the strength and feeling returned.

        Everyone’s MS journey is a little different and I wish you good luck with yours.


      • #20716
        Ed Tobias

        Hi Kath,

        I’m sorry for all of the health problems you’ve had combined with your various logistical hurdles. After retiring and moving several years ago I continued to see my neuro, which required driving 3 hours each way. It was worth it. Best care is important.

        I hope you’ll find useful information here on the forums and you’ll continue to share questions and comments.


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