Bulbar ALS - Second Opinion

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ColleenMarie

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Hello Everyone and thank you for your kind response, time and energy. I have been coping with some speech issues since May of last year. I have finally completed most tests with Neurology and my MRI, Barium Swallow, ENG, Blood Work, Sleep Study (GP put that in) look normal as of now. My speech is lousy though I have tried exercises and doing what I can. What the neurologist is left with is ALS, Bulbar. I am waiting to get a second diagnosis from an ALS Clinic when they can fit me in but the wait is long to be seen post holiday and with the pandemic burden. I lost a friend to ALS in the past so I know how terrible this is. I think I would appreciate any feedback you have on 2nd opinions, on managing the stress level as this is introduced into your life When I tried to ask about other possibilities or anything else with this neurologist, I am told to watch how things progress and then if I want, get another opinion. The Neurologist said that it doesn't always progress so quickly when it starts with Bulbar. I worry about how quickly things progress while I wait of course in spite of being told this. She would just say she knows it is hard and frightening. Do those with Bulbar have facial any early numbness, bite their tongue, difficulty swallowing? Again, thank you for welcoming me, for the support. I haven't anyone else out there to talk to and the 3 people in my family who depend on me are devastated as there was so much loss in this family already.
 

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Hi Colleen
May I ask - are you saying you had a normal barium swallow and EMG or did you have ENG?
Next time you post, maybe break your text into paragraphs and check you have said what you mean so we can be sure to answer you.
Your actual questions:
1. no
2. they might
3. definitely
 

Nikki J

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Bulbar ALS is definitely a diagnosis you want confirmed ( or refuted) by an ALS specialist. I hope you are going to a clinic at a university level center. I will add that 10% of initial diagnoses of ALS are wrong which is why second opinions are vital.

To prepare for your second opinion read this Resource - Second opinions and first clinic visits

did your neurologist prescribe riluzole and nuedexta? If they actually diagnosed you and did not I would ask why?
 

ColleenMarie

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Sorry -it was EMG (typed badly) and yes, trying to get into Duke ALS Clinic which is really in high demand. I have not been prescribed anything yet. It seemed like this was presented as what they can find now, nothing else that could be done except to move me along to a second opinion. Thank you for the resource link and the kind help. I cannot tell you how much I appreciate it!
 

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Colleen what I'm asking is if you had a normal barium swallow and EMG?
That is what is confusing me because you seem to only be reporting some dysarthria. While this is concerning it can be caused by so many things that when it is the only symptom present over 18 months, it does seem it could point away from ALS.
That is why we are asking some fairly detailed questions as just talking with you in generalities won't be helpful really.
 

ColleenMarie

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I am sorry - forgive me for not answering properly.

My Barium Swallow and EMG were both normal in November and December of last year. I met with the Neurologist two weeks ago to review all results. She gave me print outs about ALS, links for support and said the next step is to get a second opinion.

My symptoms started in May of 2021 but I did not see my GP until July who had me go to two ENTs, Speech Pathologists & Neurology.
 

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I would call her and ask about riluzole at least. It works best started early. If she diagnosed you with ALS she should offer it. If she is wrong and it is something else it won’t hurt you as long as you get the liver tests recommended. it shouldn’t require a prior authorization and is generally a generic copay for non medicare plans

Nuedexta is expensive and will require a pa. It is really for emotional lability that often comes with ALS but there is both research and anecdotal evidence it can transiently improve bulbar function.

if you have progressive voice issues whatever the cause start voice banking if it matters to you.
 

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I think it is a good idea to ask about the riluzole, but I can't see anyone diagnosing ALS with a clean barium swallow and EMG. I think you might need to clarify some of that as you get ready for the next specialist appointment.
Let us know the results.
 

ColleenMarie

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The neurologist I spoke with felt it was ALS. She did however say she recommended that I seek another opinion from a specialist. I asked her to send my results to the Duke ALS Clinic which they did (and they are incredibly backed up with a full calendar already into August). I spoke to the person who schedules there and she said that my tests would be looked at, they would give her the OK to schedule me. I am waiting to hear back.

One question I have is that she told me Bulbar can be more slow moving. I should not dive into the internet, but that is not what I read. I read everywhere it is progresses quickly. Also it would seem to me that more bloodwork would be needed or other tests. I asked her if taking prescription medications for other things had an impact and I do take Levothyroxine for Thyroid. She did not think so at all. My bloodwork was done to screen for Myasthenia gravis however and that was negative. I would think there would be lots of other tests and bloodwork.

I do have numbness on my face around my mouth. Is there a certain amount of time that goes by when you feel more comfortable having tests that did not show something else and you are left with ALS as my neurologist was - waiting for the second opinion opportunity. In other words, if symptoms do not progress - is that better?

I know you are not hear to give medical direction and sorry to exhaust you, but I trust and appreciate your support. Those who have lived through this on a personal level with people they love understand how awful this experience is. I am trying to be calm, but it is hard to focus, function, sleep and I have 2 family members who are sick with fear themselves. I do so much to support them each day in life. Again, thank you for your patience and input.
 

Nikki J

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Although bulbar is generally fast it isnot always. I have a friend who has been diagnosed over 3.5 years and had symptoms for at least a year before. They have neither feeding tube or vent but are quite disabled. Still a long way from the 2 year survival sometimes given to bulbar onset

if Duke is not until August I would encourage you to look elsewhere for a second opinion in the meantime. You can keep a Duke appointment too as if you are confirmed diagnosed you need a clinic. But if you can travel a bit there should be other places that are not such a wait. If you can what places are relatively easy to get to? Sometimes it is easier to fly so what is geographically closest isn’t always best.

there is usually a lot of bloodwork so I would think a second opinion will want more. The exact tests will vary by clinical presentation

certainly no progression is a hopeful thing but thereis not an exact rule that if you do not progress in x months it can’t be ALS
 

Clearwater AL

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ColleenMarie. I’m familiar with Duke as are others here. There’s some key
words for a glimmer of hope… “she felt.” and recommended a second
opinion. Again, “she felt” maybe not being too ALS familiar.

The lady at Duke said they would look at your tests. If there is immediate
concern… you most likely will get an appointment before August.

But, as Nikki suggested you can consider a second opinion elsewhere
as long as it is a certified ALS facility/clinic.

The waiting is so hard. Try to avoid other internet sites… we are
fortunate to have very Bulbar ALS knowledgeable members here.
 

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Definitely try and get a second opinion far earlier. I'm still feeling there is something strange as you have a clean EMG and Swallow test and have not been prescribed riluzole. So it seems your neurologist maybe doesn't understand ALS (many neurologists rarely see ALS in their entire career). Even slow progressing bulbar ALS shows on EMG and swallowing issues are one of the classic onset issues.

I would really hope you can get in somewhere specialising in ALS in the next month or two so that you can get some clear direction. I'm really sorry you are being left with wondering and being told you might have to wait 8 months to even be seen.
 

ColleenMarie

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Thank you so much for your kind responses. I am trying to get in to the Winston-Salem ALS Clinic so things happen sooner. I was also told that Duke will work on their calendar and there could be a cancellation. Unlike some clinics, they have remained open during Covid escalations and they have gotten a lot of people needing help. Like anyone, I wanted to rule out everything else too. I am recording my speech and there are many things that I wonder about, so I have a list. My symptoms seem to be swallowing or gulping a bit, numbing around my mouth and breaks when I speak, slurring, vocal fatigue. I was told that although my tests are now normal, it could be early. While my neurologists feels this is what it is, she suggested I see a specialist to confirm. She said she only encountered another bulbar ALS patient in Philadelphia once before. I think for many people you feel cast adrift which is why this forum helps (I have read many other postings from others) and it is hard to shut down an escalating, frantic and racing mind. I am trying to stay away from the rest of the internet. Again, thank you for being generous enough to weigh in and respond. It brings me great comfort knowing there is a group of people helping one another, that you are here.
 
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