MupstateNY
Distinguished member
- Joined
- Aug 15, 2022
- Messages
- 424
- Reason
- PALS
- Diagnosis
- 11/2022
- Country
- US
- State
- NY
Hi, some of you have already been helpful for me in my other thread (thanks). This past Wednesday, I went for EMG and nerve conduction at the ALS Center, where the director had told me categorically, at the tail end of August (after my own neurologist informed me in July that he suspected neuromuscular disease), that I definitely did not have it, but without explanation asked me to come back in November for them to do their own study. I didn't argue with her, and pretended to be pleased -- but I actually thought my own neurologist was onto something. In the previous few months, it seemed like my body was falling apart -- lots of seemingly disconnected health problems.
Since that late August visit to the center, I've been getting weaker week by week and by the time I went in on Wednesday, there was no doubt in my mind. Getting the diagnosis was a big relief. Now, in theory, I can start medication.
I will be honest and say that I didn't post the July and September studies from my own neurologist in the other thread, because I didn't want to risk getting into a debate. However, I don't mind showing you the recent one, if anyone wants to look at it. I downloaded this from the patient portal. As you'll see, she wrote it in a big hurry. She said she would send me the chart of numbers via snail mail. As a bonus in case anyone is interested, I'll include my Thursday baseline swallow study. If you want to know how I merged and made the lovely bookmarks and table of contents: a lovely free program called PDFSAM. (SAM means Split & Merge.)
When the Wednesday doctor was about to leave the study room, at the end, I asked if she could tell me how I did in the study. She sat down and asked, "What would you like to know?" I thought for a minute and said, "I'd like to know how I did in today's study." Then she asked me what I thought. I said, You want to know what I think? In my heart of hearts? She nodded. Me (not wanting to play the same game as with the director in late August): Well, something's wrong with me! She nodded and said, softly, "In my view, it's ALS. Three body parts are affected, legs, arms, and back." She also said that she saw a lot of denervation (or something like that). She looked like she was about to cry. I thanked her for being honest with me. I'm not scheduled to see the director again for another month. The doctor who tested me said she will talk to the director so I can start medication asap. I'm going to try very hard to get that going by the end of this coming week.
My husband got the blues the next day because although he had seen the steady changes in me, he was still hoping it wasn't ALS. Now, a few days later, he's focused more on the positive, getting started with medication.
I had told my children what I thought was going on (ages 19 and 27) already, and now I told them it was official.
I was actually pretty proud of myself for not arguing with the director in August. I remember, at age 39, getting into a heated argument with a male gynecologist, who was doing an extensive ultrasound, because my primary had diagnosed an ovarian cyst. He was saying, "I can tell you that you were wrong about the premature ovarian failure," and I was saying, "You try living with hot flashes, joint pain, thin skin, etc., etc.!" Well, it turned out he was making what he saw as innocuous conversation so he could make careful observations and measurements before revealing that I was 14 weeks pregnant!
The mistake the primary made showed me that doctors are human, and fallible, like the rest of us.
Yesterday I recorded my 50 phrases in English and Spanish for Acapela. Today, I listened to the results so far. Yuck! Me as a robot! However, the support person, Amy, had told me that I will be able to submit additional material, which will help improve the results.
I would like to try Voice Keeper as well, since apart from my slooow pace, I still have 95% of my old voice. I would have liked to try voice morphing as well, but they haven't responded to my inquiries.
Any other ideas? I want my intonation and rhythm. My husband says it didn't capture my timbre either, but that didn't bother me as much.)
Today I found out about foot braces and finger splints. I'm excited! I want to get some! I had seen the finger splints in a video about Acapela, and was having a terrible time finding the product I saw there, and today I finally found it at [link to affiliate site removed; please see Equipment & Supplies sticky for options]
I know that everyone here is full of empathy for the new arrivals, and often say kind things like, Welcome, so sorry you're here -- but in my case, would you do me a favor and just welcome me? I don't want to wallow yet, but try to focus on my PT, learning more about ALS, and enjoying my family's company for now. Thanks, everyone.
Since that late August visit to the center, I've been getting weaker week by week and by the time I went in on Wednesday, there was no doubt in my mind. Getting the diagnosis was a big relief. Now, in theory, I can start medication.
I will be honest and say that I didn't post the July and September studies from my own neurologist in the other thread, because I didn't want to risk getting into a debate. However, I don't mind showing you the recent one, if anyone wants to look at it. I downloaded this from the patient portal. As you'll see, she wrote it in a big hurry. She said she would send me the chart of numbers via snail mail. As a bonus in case anyone is interested, I'll include my Thursday baseline swallow study. If you want to know how I merged and made the lovely bookmarks and table of contents: a lovely free program called PDFSAM. (SAM means Split & Merge.)
When the Wednesday doctor was about to leave the study room, at the end, I asked if she could tell me how I did in the study. She sat down and asked, "What would you like to know?" I thought for a minute and said, "I'd like to know how I did in today's study." Then she asked me what I thought. I said, You want to know what I think? In my heart of hearts? She nodded. Me (not wanting to play the same game as with the director in late August): Well, something's wrong with me! She nodded and said, softly, "In my view, it's ALS. Three body parts are affected, legs, arms, and back." She also said that she saw a lot of denervation (or something like that). She looked like she was about to cry. I thanked her for being honest with me. I'm not scheduled to see the director again for another month. The doctor who tested me said she will talk to the director so I can start medication asap. I'm going to try very hard to get that going by the end of this coming week.
My husband got the blues the next day because although he had seen the steady changes in me, he was still hoping it wasn't ALS. Now, a few days later, he's focused more on the positive, getting started with medication.
I had told my children what I thought was going on (ages 19 and 27) already, and now I told them it was official.
I was actually pretty proud of myself for not arguing with the director in August. I remember, at age 39, getting into a heated argument with a male gynecologist, who was doing an extensive ultrasound, because my primary had diagnosed an ovarian cyst. He was saying, "I can tell you that you were wrong about the premature ovarian failure," and I was saying, "You try living with hot flashes, joint pain, thin skin, etc., etc.!" Well, it turned out he was making what he saw as innocuous conversation so he could make careful observations and measurements before revealing that I was 14 weeks pregnant!
The mistake the primary made showed me that doctors are human, and fallible, like the rest of us.
Yesterday I recorded my 50 phrases in English and Spanish for Acapela. Today, I listened to the results so far. Yuck! Me as a robot! However, the support person, Amy, had told me that I will be able to submit additional material, which will help improve the results.
I would like to try Voice Keeper as well, since apart from my slooow pace, I still have 95% of my old voice. I would have liked to try voice morphing as well, but they haven't responded to my inquiries.
Any other ideas? I want my intonation and rhythm. My husband says it didn't capture my timbre either, but that didn't bother me as much.)
Today I found out about foot braces and finger splints. I'm excited! I want to get some! I had seen the finger splints in a video about Acapela, and was having a terrible time finding the product I saw there, and today I finally found it at [link to affiliate site removed; please see Equipment & Supplies sticky for options]
I know that everyone here is full of empathy for the new arrivals, and often say kind things like, Welcome, so sorry you're here -- but in my case, would you do me a favor and just welcome me? I don't want to wallow yet, but try to focus on my PT, learning more about ALS, and enjoying my family's company for now. Thanks, everyone.
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