Just finished second opinion appointment

TippiLeigh

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I had my appointment today with a neuromuscular neurologist with the UCSF ALS clinic for my second opinion. I don't know what I was expecting, but subconsciously I think I was hoping she was going to tell me I had something else completely that my other neurologist missed. Unfortunately, she not only confirmed that she believes it is MND, but that she also can't say it's not ALS at this point, since I've started to develop some LMN symptoms since my other neurologist diagnosed me with PLS. I'm pretty bummed. I have an appointment for an EMG next month to *hopefully* rule out ALS. For now, she's getting physical therapy and occupational therapy going and we'll just have to take it from there.
 

EricInLA

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I'm sorry to hear it. I know that sick feeling in your stomach when they start talking and you sense it's going the wrong way. At my second opinion appointment a few months ago at UCLA, the doctor did her clinical exam, took a deep breath, and started talking with sentences that all started with the word "Unfortunately". Like you, I was hoping she would say the first guy didn't know what the hell he was talking about. No dice. When she started talking, I sorta went into a trance. At this point the only thing I remember was that prefatory word "Unfortunately". Well . . . . . hang in there. You're still in the running to keep the PLS status, and the PT and OT are helpful things either way. I'm at least glad you were able to get to a very good neuromuscular center.
 

KimT

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It's so hard when they just don't know. I'm hoping the EMG will put you back in the PLS diagnosis. We're here if you need support.
 

TippiLeigh

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@EricInLA yep, I definitely was hoping for the “your first neurologist is a quack!”...unfortunately I got, “You’re doctor did really well with his exam and diagnosis. Most don’t do this well!” LOL. And I totally understand the trance thing. I could tell at the end she knew I wasn’t hearing her well when she said, “How about I give you your full notes so you can read it later with your husband.”

@KimT I hope the EMG fairs well for me too! Come on PLS!! (the only person that prays for PLS is the person that doesn’t want ALS LOL)
 

lisa g

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TippiLeigh, I think we all go into our 2nd opinions optimistically that the diagnosis is going to change only to find it confirmed and have that feeling in the pit of your stomach just like when you received the first diagnosis. Let's keep our fingers 🤞 that your next EMG keeps with PLS.
 

TippiLeigh

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@lisa g thank you! I see that you’re PLS also. How are you progressing? Do you feel pretty confident that things will stay PLS you with also?
 

lisa g

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TippiLeigh, The only reason I'm in PLS status is that I have had swallowing issues since 2012 and they aren't sure if it was related to symptoms that I have now. That being said if it is related then I would have slow progression. I have not shown lmn just umn so it's a wait and see. I am still mobile just slower.
 

TippiLeigh

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@lisa g oh, gotcha! I hope it stays that way for you! And I hope that I can be like you too :) That’s all I can hope for at this point, a very slow progression. I have four kids. The oldest is 21 but my youngest is only 6. I want to be around for her as long as possible.
 

KenM

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This is an important thread and I am grateful to you all for sharing your experiences. Second opinions and changed (or not) diagnoses are a big issue and deserve more attention in the community. I hope we can continue to revisit this topic and share experiences and advice.
 

BlsdMama

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((Hugs))
Our youngest is also six. PLS is a wait and see diagnosis.... that can be frustrating. Limbo isn’t a fun place to play but slow progression is a blessing for those of us with littles. I started my first diagnosis at almost exactly this time four years ago. I was never sure we’d make it to this point and I can say that while I would love for MND to just disappear along with the struggles, it is better right now than I’d imagined. I pray this same for you. <3
 

TippiLeigh

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@BlsdMama thank you so much for sharing your experience. It really helps! This isn’t fun at any age, but it’s particularly crushing when you have young kids.
 

TippiLeigh

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Also, I got the copy of the full notes from my last appointment today. It was kind of hard to see a top rated neurologist at a top rated program write “I am potentially concerned for ALS.” Like I’ve mentioned before, it just makes it feel like that window of hope is slowly closing, although I’m praying with all my might that it just stays PLS. If I really track my symptoms all the way back, it’s probably been more like two years since I’ve started having symptoms, so I hope that means I am progressing slowly, no matter which one it truly is.

I’m strangely calmer now though than I was before seeing my first neurologist. I know when I came to this forum, my first post was emotional and erratic. I can see how a lot of people get dismissed at the beginning, sounding like anxious fools. I know I sure did. I think I named every symptom of every disease I’ve ever had, just out of sheer panic. I think a lot of people do that and are told “XY&Z points away from ALS”. Now that I am closer to a true diagnosis, I feel a bit more together and focused. I realize what is related to ALS and what is not. I also have to remind myself that when I have a health issue, it’s not always related to ALS. I can still get heart disease, cancer, stub my toe, etc. Aye, fun times! Now I’m just rambling. LOL!
 

EricInLA

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Ramble on! So much of your rambling is familiar to me. I was also sorta dismissed on these pages when I first posted. I actually think this forum needs to do a better job in that area (but that's a separate topic). Isn't it crazy that once you start getting answers -- even ones we don't want -- it reduces the stress a little? Prior to this ALS mess, by biggest problem was skin cancer (2 episodes, successfully resolved). After diagnosis, I got lazy with putting on my zinc sunblock every morning, figuring that's the least of my problems. But with time I've realized I gotta take care of other stuff. BlsdMama, I also feel that it's been better than I imagined when my symptoms and EMG alerted me to possible bad news a couple years ago. Or maybe I'm just learning to appreciate every moment with my wife and boys.
 

KimT

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People didn't believe I had ALS either. Maybe it was the length of time involved or maybe because I didn't have actual "failure." I went to four different clinics (Johns Hopkins, Mayo, U of F, and U of SF.) Prior to ALS I had the strength of a man so, when my strength was tested, they gave me all 5s and 4s. When they looked at my EMG, they seemed horrified so they gave me every test in the book. One clinic lost my spinal fluid the first time. They repeated blood work and even brought in consultants for another opinion. All before I was diagnosed.

Eric brought up a very important thing and that is to take good care of your general health, especially if you're young and especially if you are progressing slowly. The first year I knew I needed two crowns but said, "why bother?" Finally in 2018 and 2019 I got them. Last year I also got both eye lenses replaced. I didn't have cataracts but I figured with eye gaze technology AND the pain of wearing glasses since my fine motor skills in my hands made it no longer possible to wear contacts.....why not?

Now I'm rambling but I think sharing our experiences is important. Hearing things from other PALS somehow comforts me.
 

TippiLeigh

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@KimT I really need to start doing the important things. I think I feel mentally stuck because I think I’m waiting to know if it’s PLS or ALS, but logically I also realize regardless which one it is, I shouldn’t wait to get stuff in order. Just another reminder that life is short!!
 
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