Forum Replies Created

  • cmdgb6gmail-com

    Member
    August 9, 2022 at 12:46 pm in reply to: Pain

    Very similar symptoms also undiagnosed. I take Baclofen which helps some. You should be able to take Tylenol. Best to ask doctor. Good luck to you. It’s a long terrible journey to wait through for diagnosis. Want to share journey I’m here.

  • cmdgb6gmail-com

    Member
    March 3, 2022 at 8:50 pm in reply to: ALS Gene

    Question please. Anyone understand what the difference is between regular copper levels and free copper levels? And how they can help with diagnosis?

  • cmdgb6gmail-com

    Member
    January 11, 2022 at 6:59 pm in reply to: Can anyone give advice

    Thank you for your response Paul. Extensive testing has been done. Ruling all things out. Had 2 emgs with indications of nerve damage in lumbar and cervical.but not widespread not yet. I know red flags. Don’t want it to be ALS but pretty sure it is at this point.  Aunt and cousin had it. And I am evolving each day. Horrible . Hope you are comfortable. Have a good night.

  • cmdgb6gmail-com

    Member
    January 11, 2022 at 1:46 pm in reply to: Is NF-L in CSF Lumbal Puncture a reliable BioMarker?

    Hi Rony. I saw your post about neurofilament testing of spinal fluid. I actually just posted that question wondering if good for diagnosis. Have you had any luck getting a diagnosis yet? I have a Dr appointment tomorrow and will ask the neuromuscular Dr. Did insurance pay for it? Best wishes to you, Carol

  • cmdgb6gmail-com

    Member
    January 8, 2022 at 7:29 am in reply to: Eye exams of retinas to help with diagnosis
    • Thank you Kathy! Best wishes to you.
  • cmdgb6gmail-com

    Member
    January 8, 2022 at 7:03 am in reply to: Eye exams of retinas to help with diagnosis

    So very sorry for your loss Bill.  I hope you are staying stable with your ALS.  I lost an aunt and cousin to ALS. Hopefully I will have official diagnosis next week and see where I go from there. So much info on possible new drugs for ALS that may help some people. Thank you for your time.  Stay strong and safe out there.

  • cmdgb6gmail-com

    Member
    November 15, 2021 at 1:19 pm in reply to: Can anyone give advise

    Just wondering if anyone recently has made a first time appointment with neuromuscular or neurology without needing a referral?  Also just curious if anyone has had low vit d levels? Some info I’ve read leads to initiating and or progresses neurodegenerative diseases.

  • cmdgb6gmail-com

    Member
    November 13, 2021 at 4:14 pm in reply to: Can anyone give advise

    Thank you Rich!

  • cmdgb6gmail-com

    Member
    November 13, 2021 at 6:17 am in reply to: Can anyone give advise

    Thank you Richard for the wealth of information.  I feel comfort when I am on this forum and not so alone.. You all have your individual struggles with this disease and for you to take your time to respond is very much appreciated.

  • cmdgb6gmail-com

    Member
    November 10, 2021 at 5:41 pm in reply to: Can anyone give advise

    Thank you Bill. Very frustrating to say the least to get answers. Wish there was a blood test or head scan to rule out or in ALS. Most all other diseases have diagnostic tools so diagnosis can be relatively quick.  Don’t think their even close to finding something like that for sporadic ALS.  Muscle pain in back and legs from day one has been my complaints with muscle twitches and spasms in legs. Now in arms. The not knowing is horrible. I would like to keep posting with everyone but don’t want to take up anyone’s energy or time when I haven’t been officially diagnosed yet. Thank you all.

  • cmdgb6gmail-com

    Member
    November 10, 2021 at 12:14 pm in reply to: Can anyone give advise

    Thank you Bill and Mark for your replies. Just curious Mark have you been diagnosed with ALS or not yet. 3 years is a long time. I have no answers of why my symptoms have become so progressive never letting up each day. Started in one leg now so much pain stiffness of legs hips back now in arms twitches and cramps in legs all day every day.. Drs talk reassuring well you have radiculopathy of lumbar and cervical. Mild at best mris show. Constant pain and stiffness like this doesn’t fit this. I know that. Hoffman’s sign. Hyperflexia on clinical exam. Emg shows mild changes nothing else. Hard to move on. Don’t know what to do next. I understand get symptom control but my quality of life and decreasing mobility is devastating. No matter what has been ordered it doesn’t help the pain or stiffness. Standing let alone walking is painfully hard. My ? Is do I keep searching out other institutions to get different opinions. How reliable are these emgs early on? Thank you all so much. I don’t feel so alone when I’m on this forum. Don’t have support at home so reaching out to others. That’s not good huh

  • cmdgb6gmail-com

    Member
    November 8, 2021 at 10:12 am in reply to: Can anyone give advise

    Just wondering if anyone has had good results from using Theracumin for symptom relief of muscle pains etc…

  • cmdgb6gmail-com

    Member
    November 8, 2021 at 9:10 am in reply to: Can anyone give advise

    Thank you Mike for replying to my post in October. I went for my 2nd emg on October 12th.  More or less same results as 1st emg done 6 months earlier. Saw neuromuscular Dr afterwards to go over results. Few fibs and fasciculations in lumbar and in thumb index finger junction muscle. Those are new this time from first which showed none.  24 muscles done this time..  Emg was done by experienced neuromuscular Dr.   Follow up appt was without Neuro exam to check for clinical weakness. I have weakness of leg that was checked  with emg have had this for months. Hard to raise my leg  can’t to steps etc… Positive bilateral Hoffman sign. Mris show only mild lumbar and cervical radiculopathy. Sorry to ramble . Not wanting anyone to answer yes or no ALS just input whether to search another institution for answers . Neuromuscular Dr said move forward nothing is showing to indicate ALS now. Diagnosis phase is terrible . All other institutions I’ve called need referrals. Not sure I have the energy to start all over again. Thank you for listening. This community is very supportive and caring.

  • cmdgb6gmail-com

    Member
    April 14, 2023 at 8:46 am in reply to: What aspect of ALS has surprised you the most?

    I agree. I’m in daily pain. Every muscle, not just the cramping but just constant pain. Knees are painful. They snap and pop. Whole body hurts. Etc etc Also was told by director of her als clinic. There’s no pain with ALS.  Going to start back up with my local pain management clinic but acupuncture massage therapy,painful for me, didn’t help me. I take so much Tylenol. Any suggestions would be appreciated. I will revisit Dagmar’s stretching exercises also. Thank you

  • cmdgb6gmail-com

    Member
    January 7, 2022 at 4:40 pm in reply to: Eye exams of retinas to help with diagnosis

    Thank you Bill again for your responses. Trying to get this posting thing down . Not sure if I’m doing it right. Everything and I mean everything else has been ruled out. Symptoms progress every day. Pain is a big problem for me  legs so weak etc etc. Appt with different neuromuscular Dr next week at  a major University hospital.  Have you been officially diagnosed now?  Best wishes to you and your brother.  This forum is so supportive to one another. Brings comfort.