I'm scared I have bulbar onset

NekoiStar

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Hello,

This is my first time posting and I have read the two Important notes before I posted, I just wanted to get some insight from others here. I am a 37-year-old Transgender woman who is finally at a point where she's figuring out her life and is now scared that she won't live to see another year or two at most.

My own medical history is as follows I am:

  • Transgender - I had known the majority of my life that I wanted to be a Woman, not a man, I have had several instances of depression and anxiety over my physical appearance over the years, finally breaking through and understanding it around 5 years ago. I have been on Spironolactone for my Tblocker and Estradiol for my estrogen for about the last 2.5 years.
  • A type 2 diabetic - I used to have this under control with weight management and diet, only having to take a minimal amount of Metformin for several years. However, I also developed severe depression and anxiety after losing my mother to cancer and had proceeded to gain weight and lose this control, I've been struggling ever since for the last 4 years with my diabetic numbers and am now on several medications (Metformin, Pioglitazone, Trulicty) in an effort to get my numbers in check.
  • Diagnosed with GAD and MDD - As stated above, I developed a severe amount of depression and anxiety after my grandmother had passed away and in dealing with myself before I started gender transition. I have had to switch my medication for this several times in the order of Zoloft - Buproprion - Lexapro - Venlafaxine (Venlafaxine being the most recent).
  • Worked from home the last 2 years - Not really a medical issue, but it is a situation where I wanted to make note that I live a very sedentary lifestyle, often being on a PC for 8-12 hours or more a day 5-6 days of the week.

My situation started I'd say about 9-12 months ago with some mild speech issues, it wasn't all that noticeable at first, just whenever I would start to talk after being silent for a period of time, like saying "Thank you", it was like the words were stubborn to get out and afterward I would carry on as normal. From there it did not really progress further and no one really noticed it.

I ended up contracting COVID-19 around late August of last year, and the symptoms were bad, I did not need to be intubated, or hospitalized, but I had a terrible time with breathing and developed a swallowing issue with water where I would just suddenly choke on it out of the blue and have to gasp (wheezing) for air. This scared me every time it happened, and thankfully with careful behavior when I drink liquids it mellowed out, only occurring when I got careless with sudden drinking of liquids. This has continued long after Covid ended and has been a source of great anxiety for me for the last half-year or so.

Around 2 months ago I also started to get arm cramps pretty badly, this also occurred at a time when we increased my dosage of T-blockers (spironolactone) and I ended up expelling a lot more liquid than normal. I also had developed some bad eating habits out of depression and anxiety, forgetting to take some of my key medications and vitamins. Once I started to take proper care of myself again, the cramping had stopped, but I was left with weakness in my arms, more in my left (dominant) than my right, primarily in my grip strength which has inhibited my ability to write, but not type on a keyboard. I have not noticed any atrophy in either arm, but general weakness is still there.

It wasn't until around December/January of 2021/2022 that I noticed that my speech was slowing down... slurring and becoming breathy, most recently about 3 weeks ago I had an appointment with my therapist she had noticed that I had to put a lot more effort into talking to her. Most of it is visible on my face and body motions. I explained to her that it felt like I was trying to talk in molasses in which my Lips, mouth, tongue, and throat just overall moved slower and would tire out after long conversations. Since that appointment... my speech and swallowing is a constant focus on mine and I can barely eat anything solid unless it's highly lubricated or with plenty of water.

A week before this, I had seen my new GP (my old one had moved to another state) and we had decided to discontinue the Lexapro as it may be causing some of my symptoms (Dysarthria, Dysphagia) and started up Cymbalta, except I hit a snag and my insurance wouldn't cover the Cymbalta, dragging their feet their decision for approval ultimately declining it. So I had to go for several weeks without any medication for my Depression and Anxiety and the resulting withdrawals are still affecting me even though I just recently started Venlafaxine this week.

During this withdrawal period... my anxiety and depression have run amok, I had to go to the ER once for a panic attack because I couldn't breathe afterward, in which they did a chest x-ray and a CT scan of my head and found nothing immediately concerning, which is good. During this visit, they did give me a mild sedative in which I was able to sleep for about 2 hours, and afterward my speech and swallowing improved somewhat. I have not slept more than 4 hours a night as I feel I have to constantly swallow and my nerves make it so hard to breathe that I sound terrible.

I was able to push for an appointment with my GP this last week and she was able to get me an appointment/referral to the Neurologist for an EMG and a speech therapist here later this month, which does provide some relief. We also checked my base Thyroid and Transitioning hormone levels (TSH normal Estrogen Normal) to make sure there wasn't some imbalance there. She also prescribed me some Lorazepam to use at home so I can actually sleep (.5mg) which thankfully for the last 2 days has allowed me to sleep normally.

Here's my concern ultimately: I wonder if this is Bulbar Onset or if this is just some crazy anxiety train that I've been riding on for the last year that just progressively got worse and has been compounded by other potential ailments (COVID, Carpal Tunnel, Diabetes, Bad health in general). My speech is constantly slurred except in the morning when it's slightly better or I get bursts where it's better, but then it quickly devolves into the slurred, breathy, nasally sound.

I'm just terrified, I have a good family, and a support system, I still have my job, and I have a partner (overseas) who is incredibly loving of me... I just want to live to see more of it all and I've done too much Doom/google scrolling for my own mental health state and find myself overly anxious, depressed, and emotional every day. Any input would be appreciated.


Thank you for your time and consideration on this matter.

- Joanna
 

ShiftKicker

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Hi there Joanna,

Not sure if you've read any of the many other threads in this subforum recently- COVID can cause a whole variety of issues, including twitching, weakness, brain fog, heart palpitations, etc, etc. These symptoms can last many many months after the acute infection. If you look in any of Long Haulers' groups on a variety of social media platforms, you'll see all sorts of people reporting similar issues. Even the mildest case of COVID can have long lasting or delayed effects (sadly).

With regards to your speech issues- there could be so many different reasons for this and ALS would be at the bottom of that VERY long list. A visit with the neuro and the speech therapist will provide you much more reassurance and information than we here can provide you. It sounds like you have a responsive and thorough general practitioner, so your best bet is to follow their lead and keep exploring. It's not clear if you're seeing a neuro at your request, or if your doctor thought there was a neuro component to your symptoms.

Please take care-
 
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lgelb

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Cycling between SSRIs and SNRIs as you have done, as well as anxiety itself, can cause a host of issues such as you describe. SNRI withdrawal in particular can be rough.

Unfortunately, you are in a chicken/egg situation so I would stick out the venlaxafine to get the consistent blood levels, and step up counseling/rest/sleep (not depending on even small doses of benzos ultimately) stuff, so as to get a new and hopefully better baseline. I see no reason to think about ALS.

Best,
Laurie
 

affected

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I can see you have had a long run of concerns that are quite complex.
My husband was bulbar onset, and so very different to the descriptions you give, but it is good that you are booked to see both a neurologist and a speech therapist as they are very likely to help you get to the bottom of this.
The number of causes for what you have described so far is large, and ALS is one of the least likely.

I know that is not going to allay your fears, but this has been going on for some time, and now you are just about to be seen by neuro and speechy, so it is best for you to spend this time working on your mental general physical health. We can't possibly give much input on such a complex situation, that would be improper as we are not doctors and can't even see you. Please don't try to solve this in advance, the doctors are working to help you, let this happen.

Please do let us know the outcome.
 

NekoiStar

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Hello again,

I just want to say thank you for all of your prompt responses. I've been reading up on the forum the last few days and really found a lot of the answers to be more grounded in actual life experiences instead of just general facts and textbooks. I've done so much cramming of this copy/pasted medical jargon on what is and is not ALS that I have lost all common sense and should try to do my best in just recovering instead of pacing myself into a circle of doom.

I thank you all so much again... for giving me some down-to-earth words and helping bring me closer to the ground as my own fear was taking me to terrible places. I have absolute respect for you who have suffered, experienced, and lost those you have loved to this.

I will post again with my results from the EMG and Speech Therapist as they come, I'm going to stay the course on my current meds and just focus on trying to live every day instead of doom scrolling.

Thank you again from the depths of my heart.

- Joanna
 

wishmobbing

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Hey Joanna! Your body and mind have been through so much! I'm just sending you a bunch of extra energy to help you with selfcare and dealing with medications' side effects and very likely Post-Covid. You seem to have a good understanding of your situation, but I'm sure it's just a LOT at times.
Grieving for a loved one alone can do weird stuff to your body.
I'm very confident the neuro's exam and EMG will clear you of ALS and Co and help you put that to rest.
Take good care and (only if you don't find it triggering anxiety) come back to let us know how it went.
 

NekoiStar

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Hello again,

I had my first EMG today and am incredibly terrified at the notation of the wording "Suggest a more widespread process such as motor neuron disease"... The doctor was super quick to schedule me for a follow up with another neurologist tomorrow afternoon for a consultation and my GP just called to move my appointment with them up to next Monday.

Could I have one of you look at this and tell me what they saw? I'm scared out of my mind and am now fearing for tomorrow and scared for my life now.
 

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Nikki J

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I don’t think it is a slam dunk yet. I expect tomorrow you will have mris and a more extensive emg ordered as well as blood work. I have seen a report of denervation on emg from long covid too. Now that the issue has been raised I would ask for a referral to an ALS center. They are the only people I would accept a diagnosis from. If you have a counselor I would call them because whatever happens it will be stressful. Good luck
 

wishmobbing

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Thank you for updating us. Phew, that sentence you quoted wouldn't leave me cool either. I can't tell you anything about the EMG results. The only thing I can do is give you a hug.
It's a very good thing they don't leave you dangling with this for long and scheduled a second opinion tomorrow.
I'm keeping my fingers crossed for tomorrow's neurological exam. So far it "just" suggests MND, let's hope for the best.
I don't know if this thought might help you until tomorrow: If you have a MND, you had it for some time, you have it right now and you will have it in the future. You dealt with s*** before, you shouldn't but you could deal with this and you won't be alone doing it.
If tomorrow they don't find you have MND, you had a very scary day that will hopefully turn into big relief.
 

NekoiStar

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So I had my round with the neurologist consultation today. My initial EMG and follow-up physical today are pointing towards ALS. We're doing follow-up bloodwork, EMG, and MRIs in the next few weeks to eliminate any potential mimics and to access the damage. He is ordering me to take a 3-month leave from work, thankfully I do have short-term disability coverage so I should be good at least for a while.

I'm so scared right now... I have insurance... but what happens if I end up losing my job... Is there any help financially for this?
 

Nikki J

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Once you stop work if you have a diagnosis of ALS and enough social security credits you can immediately apply for ssdi and medicare. There is no longer a waiting period for ALS though you won’t get the money instantly but it should be backdated. Do you have long term disability? Usually it is written so the amount you are entitled to will be decreased by your ssdi. Example your ltd calculates as 2000, ssdi is 1000 so you would get 1000 from each. Of course there may be exceptions but that is usual

are you being seen in an ALS clinic? If not please ask for a referral even though the workup is in progress. You can always cancel if things go in another direction
 

wishmobbing

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Joanna, I'm sorry you are going through all of this. The 3-month-leave is a good plan so you can deal with all of the exams, the mental load and potential paperwork.
Don't forget to be good to you and your body. Maybe ask someone to drive you to the doctor's appointments for company and support.
Keep us updated and all the best!
 

NekoiStar

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Hello, I am writing a follow-up to my last post. I'm a lot calmer than I have been in the last few weeks, it's most likely the Venlafaxine starting to work, or perhaps I'm in a numb-shock state. I've been busying myself with getting my leave paperwork in order and other potential documentation and paperwork for SSN and Medicare/Medicaid if I do get the full diagnosis.

As of right now, my current condition listed is just "Motor Neuron Disease" I know there is a list of them, and we're still awaiting confirmation from additional testing like Bloodwork for Myasthenia Gravis, MS, as well as an additional, longer session for EMG and MRIs. I know for a fact that there is weakness in my arms, primarily the left, but the right is affected as well, and my speech is definitely a lot slower than it used to be, but still clear and understandable. I had a barium swallow the other day and thankfully it showed normal swallowing patterns and a bit of Acid Reflux damage, but nothing critical.

My Doctor wants me to get a 2nd opinion, but up here in MT is not possible, so I have to make an appointment at another ALS facility out of state. I have found one in Salt Lake City and it is within my insurance "In house" so I should be able to get an appointment lined up, I just hope sooner than later.

I'm just trying to find a nice list of what I should prepare while I still can with my own mobility, with my voice and arms going first I"m scared I won't have much time to do so. I know there is a list here somewhere in the forums that has information like that, but I can't find them now...

Does anyone know where I can locate that information?


I'm scared but determined and praying that this is something like Myasthenia Gravis... I would take that lesser evil in exchange for being around a bit longer with my family and the one I love. Thank you for your time and partnership on this matter.
 

ShiftKicker

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Hello-

There are a couple places to have a look at:

Getting a second opinion: Second opinion/clinic visits

Resources (a pretty comprehensive list): Resources

Have a read through and feel free to ask for clarifications. It's a lot of information, and can be overwhelming. We're here to provide assistance however we can.

~F
 

wishmobbing

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I'm scared but determined and praying that this is something like Myasthenia Gravis... I would take that lesser evil in exchange for being around a bit longer with my family and the one I love.
I'm keeping my fingers crossed for you and that trip to Salt Lake City. You got this. If never feels like enough time but there can be a whole lot of living and preparing done in little time.
 
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