KateMMA
Active member
- Joined
- Apr 30, 2019
- Messages
- 30
- Reason
- DX MND
- Diagnosis
- 02/2019
- Country
- US
- State
- CA
- City
- Oceanside
Hi everyone!
My diagnosis recently changed from Hirayama's to ALS and I'm going to have a second opinion at the UC Davis ALS clinic in a few weeks and I wanted to know what to expect.
I was seeing a neuromuscular specialist until recently (I moved from California to Hawaii) and now I'm seeing a neurophysiologist. Of course, neither of them diagnosed me in just one visit and it was a series of blood work, MRIs, x-rays, EMGs and nerve conduction studies. So, what should I expect from my second opinion appointment? They'll have my medical record, so will they just look at that and do a clinical assessment or will they do an EMG/nerve conduction study, or something else entirely? Also, is there anything I should ask?
On a separate note, I'm having pain in my calf kind of like when a needle goes in wrong during an EMG. Is that a sign of disease progression, as in muscle wasting, or is it probably just a strain and nothing to do with ALS? I was hoping to be able to avoid walking assistance devices for a bit longer and this is scaring me a little. I've been slow progressing so far, hence the initial misdiagnosis, so I'm hoping it's nothing to worry about and I still have time.
Also, before my diagnosis, I was planning to lose the baby weight (about 20-30 pounds) but after reading on this forum that losing weight can accelerate progression, I'm a little hesitant. I'd rather be chubby and stick around a little bit longer to see my babies grow up if that's what it takes!
Lastly, does anything ever get back to feeling normal again after diagnosis? It's not that I'm crying all the time or depressed or anything but it just feels like "the diagnosis" is just ever present. Not in a way that keeps me from going about my day but everything reminds me about it. I constantly think, "I won't be able to do that someday" or, when my best friend (also in her 30s) said something about saving something for her grandkids in about 25-30 years, all I could think was, "Oh yeah, I'll never get to meet my grandchildren."
It feels like a loss of innocence. I can't just live a normal life anymore; everything is slightly shaded by this disease now. I feel like I can never go back to just living, which is especially sad because I don't know how much life I have left now.
Anyway, thanks for reading if you made it this far! Also, if this is not the right place to post these kinds of questions, please let me know.
My diagnosis recently changed from Hirayama's to ALS and I'm going to have a second opinion at the UC Davis ALS clinic in a few weeks and I wanted to know what to expect.
I was seeing a neuromuscular specialist until recently (I moved from California to Hawaii) and now I'm seeing a neurophysiologist. Of course, neither of them diagnosed me in just one visit and it was a series of blood work, MRIs, x-rays, EMGs and nerve conduction studies. So, what should I expect from my second opinion appointment? They'll have my medical record, so will they just look at that and do a clinical assessment or will they do an EMG/nerve conduction study, or something else entirely? Also, is there anything I should ask?
On a separate note, I'm having pain in my calf kind of like when a needle goes in wrong during an EMG. Is that a sign of disease progression, as in muscle wasting, or is it probably just a strain and nothing to do with ALS? I was hoping to be able to avoid walking assistance devices for a bit longer and this is scaring me a little. I've been slow progressing so far, hence the initial misdiagnosis, so I'm hoping it's nothing to worry about and I still have time.
Also, before my diagnosis, I was planning to lose the baby weight (about 20-30 pounds) but after reading on this forum that losing weight can accelerate progression, I'm a little hesitant. I'd rather be chubby and stick around a little bit longer to see my babies grow up if that's what it takes!
Lastly, does anything ever get back to feeling normal again after diagnosis? It's not that I'm crying all the time or depressed or anything but it just feels like "the diagnosis" is just ever present. Not in a way that keeps me from going about my day but everything reminds me about it. I constantly think, "I won't be able to do that someday" or, when my best friend (also in her 30s) said something about saving something for her grandkids in about 25-30 years, all I could think was, "Oh yeah, I'll never get to meet my grandchildren."
It feels like a loss of innocence. I can't just live a normal life anymore; everything is slightly shaded by this disease now. I feel like I can never go back to just living, which is especially sad because I don't know how much life I have left now.
Anyway, thanks for reading if you made it this far! Also, if this is not the right place to post these kinds of questions, please let me know.