TippiLeigh
Active member
- Joined
- Jun 13, 2020
- Messages
- 96
- Reason
- DX UMND/PLS
- Diagnosis
- 07/2020
- Country
- US
- State
- CA
- City
- XXXX
After months and month of bloodwork, imaging, testing, etc. my neurologist diagnosed me with PLS about a month ago. He referred me to an academic hospital for a final diagnosis/second opinion, although he seemed certain it was PLS. I’ve been waiting weeks to get in with the academic center. They finally called me today and explained why there was such along delay. Apparently the patient coordinator accidentally sent it to the MS clinic first. After that neurologist reviewed it, he said, “She doesn’t have MS!” And he sent it back to the patient coordinator who then decided to send it to the General Neurology clinic. Their neurologist reviewed my chart and said, “She should be going to the neuromuscular/ALS clinic”. Umm, yes! That’s what we’ve been trying to do! (Sorry, that was just a side note story of my frustration from earlier today.)
Which brings me to my question while I wait for eternity to actually get an appointment. I’m starting to show some signs that I think are more LMN, making me worried that maybe I have UMND ALS or just straight ALS. My local neurologist didn’t do an EMG because, in his words, “It will only exclude ALS and the academic hospital will want to do their own so I don’t want to put you through that twice.” A couple of my concerning issues are extreme weight loss. I’m usually around 130lbs, but I’ve dropped down to 96 lbs (since about May) and I can’t get any back on no matter how hard I try. My husband, who is also a physician, noticed atrophy in my buttocks. I have two nice-sized craters. (Although, could just be from the weight loss and my need to sit more.) The tendons in my hands and feet are becoming very prominent. I’ve started having fasciculations in my buttocks where the atrophy is and also in my upper outer left arm. My weakness is progressing. It used to just mostly be my left leg but its gone up my left side and now my right arm and leg are now getting weaker And both hands are increasingly losing dexteritY. Just not sure if those things can be part of PLS. Depending on which literature you read, there’s so much controversy over whether or not PLS and ALS are completely different diseases or if they are just the spectrum of one disease. I just want to figure out which one it is so I can at least have a better idea of how my body might continue to progress so I can plan at least a little bit of my future...
And I realize I will have my answer once I finally get in for an EMG, but by the way they handled my paperwork, I’m not too confident it will be anytime soon! LOL!
Which brings me to my question while I wait for eternity to actually get an appointment. I’m starting to show some signs that I think are more LMN, making me worried that maybe I have UMND ALS or just straight ALS. My local neurologist didn’t do an EMG because, in his words, “It will only exclude ALS and the academic hospital will want to do their own so I don’t want to put you through that twice.” A couple of my concerning issues are extreme weight loss. I’m usually around 130lbs, but I’ve dropped down to 96 lbs (since about May) and I can’t get any back on no matter how hard I try. My husband, who is also a physician, noticed atrophy in my buttocks. I have two nice-sized craters. (Although, could just be from the weight loss and my need to sit more.) The tendons in my hands and feet are becoming very prominent. I’ve started having fasciculations in my buttocks where the atrophy is and also in my upper outer left arm. My weakness is progressing. It used to just mostly be my left leg but its gone up my left side and now my right arm and leg are now getting weaker And both hands are increasingly losing dexteritY. Just not sure if those things can be part of PLS. Depending on which literature you read, there’s so much controversy over whether or not PLS and ALS are completely different diseases or if they are just the spectrum of one disease. I just want to figure out which one it is so I can at least have a better idea of how my body might continue to progress so I can plan at least a little bit of my future...
And I realize I will have my answer once I finally get in for an EMG, but by the way they handled my paperwork, I’m not too confident it will be anytime soon! LOL!