NekoiStar
Active member
- Joined
- Apr 16, 2022
- Messages
- 37
- Reason
- PALS
- Diagnosis
- 05/2022
- Country
- US
- State
- MT
- City
- Billings
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:
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
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
