Forum Replies Created

  • jflesch82

    Member
    December 3, 2020 at 6:20 pm in reply to: I feel my Dr. is hiding the truth

    Hi Lisa,

    I have not been diagnosed yet but I am certain that I have ALS. Everything else has been ruled out so I am simply waiting to find the right doc at the right time to diagnose me. Good luck on your journey.

    -John-

  • jflesch82

    Member
    December 3, 2020 at 5:04 pm in reply to: I feel my Dr. is hiding the truth

    Hi Lisa,

    I am sorry about what you have been going through. Reading your post really hits home for me. I have had progressive weakness, twitching, pain, tingling and tightness all over since May 2019. I have literally had 100’s of tubes of blood tested, 5 EMGs, a muscle biopsy, spinal tap, a dozen MRIs and CT scans, etc. I have also seen about a dozen specialists including neurologists, Rheumatologists, endocrinologists, etc. including neurologists from NYU and Columbia in NYC. I have yet to get a diagnosis or straight answer from anyone. I have been told many times “I don’t think it’s ALS but I’m not sure what it is.” Or “no news is good news.”

    The truth is that I don’t trust any of these so-called specialists and I’m willing to bet most of them never even seen or treated an ALS patient. On several occasions, I have had the same specialist suggest I may have carpal tunnel syndrome, neuropathy, an autoimmune disease and other disorders all in the same appointment. I have been passed around from one specialist to the next like a hot potato.

    I have done thousands of hours of research on this disease and I’ve never heard of another disease “turning into” ALS. Most doctors beat around the bush and never commit to a diagnosis in fear of being held legally accountable or hurting their ego if they wrong. They only make a definitive diagnosis when they are absolutely 1000% confident in their diagnosis. I have chatted with a handful of pALS, most of whom told me they weren’t diagnosed until their symptoms were advanced and they had lost significant function in a few areas of their body. In many cases, it seemed to take 18 months or more to get diagnosed.

    My hands and arms have progressed most recently. I expect an ALS diagnosis sometime soon but the question is which doc will be honest with me and have the guts to tell me. Everything else has been ruled out for me so it’s just a matter of time. Trust your gut and be relentless in your pursuit for answers. Never lose hope. I know it’s hard and very emotional everyday. I’m right there with you. Keep faith. Keep fighting. Good luck and God bless you.

  • jflesch82

    Member
    July 16, 2020 at 4:44 pm in reply to: How long did it take for an ALS diagnoses?

    I have seen neurologists at NYU and Columbia in addition to several local neurologists here in NJ. They all said no ALS. One said possible fibromyalgia. One said possible small fiber neuropathy. One said possible unspecified autoimmune disease. Several guesses but nothing concrete. Awaiting a spinal tap to gather more info. I’m losing hope day by day.

  • jflesch82

    Member
    July 16, 2020 at 3:51 pm in reply to: How long did it take for an ALS diagnoses?

    To add to my previous post: my muscle weakness and twitching are now widespread throughout my entire body. I also have muscle cramping, tightness and pain. I have worsening jaw and neck pain which feels like nerve pain. Recently, I have experienced neuropathic itch when I get moments of bad nerve pain in my arms, hands, legs, feet, face, etc. My nerves are definitely involved but my weakness is my worst symptom. Thanks again everyone.

    -John-

  • jflesch82

    Member
    July 16, 2020 at 3:46 pm in reply to: How long did it take for an ALS diagnoses?

    Good afternoon all,

    In May 2019, I began experiencing tingling in my left arm, hand and some on the left side of my face/head. In June 2019, I developed an intermittent left eyelid twitch. In July 2019, I started having weakness and tightness in the back of my legs. In August 2019, I developed random twitching (fasciculations) along with increasing tingling and numbness in my extremities and other random spots. Since then, all these symptoms have gradually progressed and worsened. I’ve had 4 EMGs (latest in June 2020), countless blood tests and seen many neurologists and other specialists. I’ve been told I don’t have ALS by every doc but no one knows what is wrong with me. I am convinced I have ALS but without a dx, I haven’t received any treatment. I’m slowly getting worse and need answers ASAP. Does anyone have any info that could be helpful? My wife and 3 young children are also dealing with this along my side and it’s so hard to live like this. Any info or suggestions would be greatly appreciated. Thank you and God Bless everyone and their loved ones!!!

    -John-