undiagnosed

  1. S

    Accepted into the NIH's Undiagnosed Program

    Hi all, Some of you know me here, but for those of you who don't, I was diagnosed with the UMN Hereditary Spastic Paraplegia at Houston Methodist back in 2014. At the time, I was in my 30s and experiencing a great deal of stiffness in my legs, difficulty walking, and had started falling. I...
  2. D

    Does this sound like ALS? Is this a helpful EMG?

    Hi! First of all I'd like to thank you all for accepting me, and also I'd like to acknowledge all of you as true warriors. Helping others while you're getting through all the stuff you have to live, is truly remarkable. May God bless all of you. I hope you could help me out. I'm a 25 y.o. male...
  3. J

    Question after appointment

    I recently had an appointment with my neurologist and their pain management specialist, since I’ve continued to have pain in face, arm and leg for about a year. This is in addition to muscle twitching for 12 months (random but primarily in calves at rest). The pain in face also impacts my tongue...
  4. J

    Numbness, muscle twitching, and no diagnosis? Read this.

    This post is for those who are currently experiencing numbness and muscle twitching and, like me, tend to automatically assume the worst case scenario. I felt compelled to write this a year and a half after first experiencing neurological issues because #1, it seems that a lot of folks who...
  5. H

    Can an inflamed Brainstem Lesion Rule Out ALS

    Hi all. Sorry to come hear undiagnosed, but I am going out of my mind atm... For the past year now, I have been dealing with some somewhat progressive walking-coordination symptoms, which some days are better than others. My MRI last year showed a 6mm lesion at the midbrain-pons junction. My...
  6. TonyEmber

    Undiagnosed with 'extensive' motor neuron damage in emg

    Hi everyone, I'm very grateful to reach out to the resources on this forum. I've read through the most read posts and have good cause for concern. I'm not sure what information to give you, I believe the most important is the EMG results. My first EMG in October showed extensive motor neuron...
  7. D

    Should ALS be on the table?

    First I want to thank the administrators and moderators of this forum for providing this resource despite battling a terrible disease. I send all of you much respect and admiration. I have read the stickies in this forum and will try to abide by all of your rules. My situation is that I am...
  8. M

    A 10yr update and still undiagnosed

    Hello Everyone, I got some personal messages about my status and thought of sharing with you. I am still freaking out over ALS by the way, which is not healthy at all... I'm a 39 yr old man who has been experiencing ongoing neurological/muscle issues for the last 10 years. I will summarize...
  9. Y

    3.5 years with symptoms, finnaly went to ALS doctor

    Hello, I promised I will not post until I get checked with my doctor. I still have an appointment with rheumatologist but it will be in April. So as the title says, i’ve been to als neurologist in Slovenia. The doctor seems really nice and well educated, I’m a bit calmer now. He did complete...
  10. A

    Difficult Concerns

    Hi all, I have been reading this forum for a few months now to try to soothe my fears, but I have never posted. Lately my concerns have grown greatly so even though the very last thing I want to do is waste your time when you have concerns far greater than my anxiety, I felt compelled to bring...
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