Relieved to get my dx on Wednesday

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MupstateNY

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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.
 

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Nikki J

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I can understand the relief of being released from limbo and being able to access treatments and other supports. So ok welcome. We do always recommend a second neuromuscular opinion both for confirmation and also just a different take on how to address things.
I hope you can find a voice solution that meets your expectations

a good orthotist that understands ALS is important as different braces work better for different people. Ditto for an ot.

sounds like you hit the ground running
 

MupstateNY

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Thanks! I think my own neurologist was about to give me a dx too.

The Voice Keeper support claims I can use the Team Gleason grant for their service instead, but I haven't figured out how to do that yet. I guess tomorrow I'll start Voice Keeper recording. As long as I go nice and slow, I think my results are quite acceptable. Not as good as a year ago, but good enough, as long as the software doesn't turn me into a robot.

I'm working on getting an order for the orthotics. I'm kind of scared about all the things to figure out in the future, but if I can get the orthotics and the medication and keep plugging away with the recording and the OT, I guess the medical providers will guide me with the biggies as my needs change. I did ask, at the swallow study, if I can get a PEG locally if I need it later. I have no idea what a PEG is yet, but I guess I don't need to quite yet! I'm still fine eating, if I go slow and sip lots of water as I go.

I am glad I found the forum a few months ago.

Am I allowed to respond to other people's posts in other threads yet? If not, what do I need to do to prepare for that?
 

Mary2

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Welcome MupstateNY. Your doing a great job being pro-active! My PALS has some leg splints but I will look at the link you posted to see if there are any other orthotics he could benefit from. I told my son age 27 now that my PALS could have ALS the night before we went for the second EMG at Emory. ALS had never been mentioned to us, but I was looking at Dr. Google and all the clinical signs and symptoms were pointing in the ALS direction. When it snows in Western New York it really snows. I'm on a blog with a lady from New York and she says in 24 hours they got 72 inches!
 

MupstateNY

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Mary2,

Fortunately I'm not quite in what they call Western NY. Once in a while we get a lot but it's not like in Buffalo.

I figured out that one of my children had Tourette Syndrome! Sounds like you're a good googler.

So, did the dx come the day after you told your son? Or later?
 

Smjacobsdmd

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Welcome MupstateNY. It seems you joined here just a couple of weeks before me. My first local diagnosis was locally in August, 2022 and confirmed in October and I had my first multidisciplinary about 10 days ago. There seem to be a core of great people on this site who have a wealth of knowledge. My experience was the website requires 10 posts before I was off probation and could post more than once a day and react to others posts.
 

MupstateNY

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Thank you, may I call you Jacob?

I guess I posted enough on my other thread, that I seem to have gotten off probation already -- yay. Once in a while I read someone's post and start itching to respond with some practical idea that they might want to consider, and I guess now I will be able to do that.

Amazingly, I was able to book a 15-minute videoconference with Voice Keeper for tomorrow!
 

Clearwater AL

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MupstateNY, as you asked... just "Welcome." Thank you for your full report. Great job being pro active.
 

Mary2

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The diagnosis came after the EMG the next day. My response was to lose my appetite. I had a bag of Nestle's miniature crunch bars and I lived on those! So much for stress management! PAL's got the Bi-Pap and his breathing improved and he started gaining weight. We also got a hoyer lyft. Our daily life much improved after we got this equipment.
 
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MJT

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Welcome, Mup! You might want a prescription for the AFO (leg braces). Those are invaluable to my PALS. He is 95% wheelchair-bound but can use the braces to stand in the restroom at a restaurant, for example. We have 3 children close in age to yours. Their help has been invaluable. Are yours close by?
 

Nikki J

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A peg is pften used to mean feeding tube but actually refers to a type of procedure that is used to insert one. The things that indicate when it is time: swallowing issues , coughing after eating which may indicate silent aspiration, inability to eat enough to maintain weight and deteriorating breathing ( often 50% is used). You neurologist may suggest it is time at some point. Believe them!

are you now at an ALS clinic? I do believe there is value especially at first

re restrictions. There are two kinds: the forum software one Steve mentioned which are dictated by numbers of posts and the forum rules that undiagnosed people need to stay on their own thread. At this point neither apply to you. We do ask that PALS respect the CALS threads and generally should not post there and vice versa the CALS don’t post in the PALS subforum.
 

MupstateNY

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Thanks, Nikki, for the two explanations. I do cough when I don't coordinate the swallowing process properly. So far I've been using sugar-free cough drops (suck for a minute, then put it back in the twisty paper). I found the CALS posts in this thread helpful, so I hope the moderators aren't super strict about not mixing. The director of the ALS Center wrote to me in the portal on Saturday, in response to a message I sent on Friday. She was kind and said they would get me in sooner, and outlined my first med and the necessary monthly blood tests.

MJT, thanks for the leg braces comment. I wrote to my neurologist's portal yesterday, let's see what tomorrow brings. I read that to get them covered, the order must be written by a neurologist. Our 19yo lives with us and the older one will be visiting soon, for several weeks.

Mary2, it sounds like ideally you guys would have gotten a dx and guidance rather earlier, but I was interested to hear about the things that were helpful.

I finally found the Voice Keeper demo. It was pretty awful too.

I found a product called Synthesia which made a fantastic synthetic speech, from a challenging custom paragraph that I pasted in. Unfortunately, that product is designed to create voiceover and training videos. But I don't need video! I hope they respond to my email tomorrow. Meanwhile, I will keep exploring, as time permits.

Question: is there a video somewhere that will show how a family member can help me climb stairs? I pull with the bannister but then I'm wiped out after that. (Just last week, it was a bit easier....) Or should I start a new thread for a specific question?

Thank you, everyone. I feel less alone having this forum to turn to.
 

Nikki J

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To clarify on the who can post where it is the threads on the CALS and former CALS subforums that PALs generally do not post on. ( you may rarely see me there because I am also a former CALS and if I do post there I speak in that voice). You are welcome to read though at your own risk as it is a place for CALS to share frankly On this subforum , on general,tips and tricks etc both CALS and PALS can post so if you want input from all for a question general discussion is often good

Stairs are hard. I am not sure how much your family can help other than accompanying you for safety. Pushing and pulling could be dangerous for both parties. You need to plan ahead. Some people make a living space on the ground floor, some actually install an elevator. My sister had a stairlift but those are hard when you lose core strength. I moved. It is an unfortunate fact that stairs once difficult will become harder and then impossible
 

Mary2

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My PALS did use a chair lift for about two years. We had one to the upstairs and then a second one to the garage. Then one day he came downstairs and said he was never going back upstairs again. We set up the family room as a bedroom and haven't looked back. We got an electric bed for him at that time. My PALS was originally diagnosed with peripheral neuropathy. His first EMG at Emory in 2018 did not show ALS.
 
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