ColoradoHoosier
New member
- Joined
- Aug 3, 2021
- Messages
- 7
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- CO
- City
- Lakewood
Hello,
First of all, I'm sorry to those of you that are here. Given my last 10+ months of symptoms, I try to empathize with those of who have been diagnosed. I pray you stay strong and hopeful in what I can only imagine feels so hopeless.
I have been a very healthy individual my whole life, working out regularly with a clean diet. I was a college athlete and spend a lot of times in the mountains hiking and skiing. I recently got engaged at the end of last year to a fantastic woman, I feel very fortunate.
I'm concerned with my second appointment with a neurologist next week. The backstory is that in May of 2020 I experienced an infection on my leg, at the time I didn't think much of it until it grew to about 6" and had a necrotic point in the middle. I live in Colorado and had done a lot of camping and hiking around that time. My lymph node next to my groin swelled to the size of a peanut. I had a telehealth appointment and was prescribed a weeks worth of Doxycycline and the infection disappeared. A few weeks later I started to notice I would slur words when having limited alcohol, I'm 36 (35) at the time and had never experienced that after a few glasses of wine. This progressed throughout the summer, and finally came to a head in October of 2020 where I started to slur words without any alcohol. Other symptoms included back and neck pain, and overall fatigue greater than what I was accustomed to.
I had a picture of the infection and was referred to a LLMD and diagnosed with Lyme Disease in December of 2020 based on what was thought to be an EM rash. After initial blood testing, I came back positive for antibodies to Rocky Mountain Spotted Fever and Mycoplasma Pneumonia. Lyme was negative, although I've had it explained to me that ELISA and Western Blot tests are highly inaccurate. I also uncovered low TSH levels. I started treatment with high hopes things would get better.
Since then, things have not gotten better. I had a PICC line and a couple months of ceftriaxone plus supplements. My speech seemed to have some good days, but progressively never seemed to get better. The back pain, neck pain, etc. had all dissipated. Finally, in June my LLMD referred to me to a neurologist based on progression of symptoms who I saw last month. Other symptoms included difficulty swallowing liquids, and weakness in my lips/tongue (I can no longer whistle). My speech has gotten progressively worse, it is better in the mornings but ends up getting worse throughout the day and is much worse at night. I have also lost 25 lbs (I was 6'1 183 and now weight 158 lbs.).
After testing the neurologist uncovered significant fasciculations in my tongue, weakness in my cheeks (cranial nerve 7) bilaterally. It was clear to her I have something affecting my nervous system. More concerning was she then discovered spasticity in my left arm. I also had grip strength of 55 lbs in my left arm and 82 lbs with my right arm. Since then I've noticed the fingers in my left hand are not moving anything close to the speed of my right. Overall, it's not overwhelmingly noticeable but is definitely apparent. I have muscle twitching all over. Previously it was more isolated to my chest/should area earlier this year. Now it is happening in my biceps, quads, chest, and forearms. The last peculiar symptom would be I've developed vitiligo on my neck which I know can be indicative of autoimmune.
The neurologist ordered labs for autoimmune, is doing an MRI of my neck to check for demyelination or a tumor. An MRI of my brain came back fairly unremarkable only showing slight neuroinflammation/encephalitis and an empty sella. I have an EMG scheduled for later in the week. Autoimmune disorders, neuro junction disorders, and MND are all on the differential. She is not suspecting it is viral or bacterial but is not ruling it out entirely. Despite treatment I still have a fairly significant Mycoplasma infection that won't go away, it's been pretty stable for 9 months.
My hope has been in the fact that given my first Bulbar symptoms were 14 months ago I figured I'd be worse off physically than I am. Everything started after a significant infection in my leg, which doesn't seem to match up with ALS. I also know given my age and previous baseline that a slow progression of Bulbar Onset isn't out of the question.
Would anyone who has experienced Bulbar Onset relate to this? Again, I'm sorry to bother you all. Transparently, I'm hoping after next week that a repeat visit to this forum isn't necessary.
Best Regards,
First of all, I'm sorry to those of you that are here. Given my last 10+ months of symptoms, I try to empathize with those of who have been diagnosed. I pray you stay strong and hopeful in what I can only imagine feels so hopeless.
I have been a very healthy individual my whole life, working out regularly with a clean diet. I was a college athlete and spend a lot of times in the mountains hiking and skiing. I recently got engaged at the end of last year to a fantastic woman, I feel very fortunate.
I'm concerned with my second appointment with a neurologist next week. The backstory is that in May of 2020 I experienced an infection on my leg, at the time I didn't think much of it until it grew to about 6" and had a necrotic point in the middle. I live in Colorado and had done a lot of camping and hiking around that time. My lymph node next to my groin swelled to the size of a peanut. I had a telehealth appointment and was prescribed a weeks worth of Doxycycline and the infection disappeared. A few weeks later I started to notice I would slur words when having limited alcohol, I'm 36 (35) at the time and had never experienced that after a few glasses of wine. This progressed throughout the summer, and finally came to a head in October of 2020 where I started to slur words without any alcohol. Other symptoms included back and neck pain, and overall fatigue greater than what I was accustomed to.
I had a picture of the infection and was referred to a LLMD and diagnosed with Lyme Disease in December of 2020 based on what was thought to be an EM rash. After initial blood testing, I came back positive for antibodies to Rocky Mountain Spotted Fever and Mycoplasma Pneumonia. Lyme was negative, although I've had it explained to me that ELISA and Western Blot tests are highly inaccurate. I also uncovered low TSH levels. I started treatment with high hopes things would get better.
Since then, things have not gotten better. I had a PICC line and a couple months of ceftriaxone plus supplements. My speech seemed to have some good days, but progressively never seemed to get better. The back pain, neck pain, etc. had all dissipated. Finally, in June my LLMD referred to me to a neurologist based on progression of symptoms who I saw last month. Other symptoms included difficulty swallowing liquids, and weakness in my lips/tongue (I can no longer whistle). My speech has gotten progressively worse, it is better in the mornings but ends up getting worse throughout the day and is much worse at night. I have also lost 25 lbs (I was 6'1 183 and now weight 158 lbs.).
After testing the neurologist uncovered significant fasciculations in my tongue, weakness in my cheeks (cranial nerve 7) bilaterally. It was clear to her I have something affecting my nervous system. More concerning was she then discovered spasticity in my left arm. I also had grip strength of 55 lbs in my left arm and 82 lbs with my right arm. Since then I've noticed the fingers in my left hand are not moving anything close to the speed of my right. Overall, it's not overwhelmingly noticeable but is definitely apparent. I have muscle twitching all over. Previously it was more isolated to my chest/should area earlier this year. Now it is happening in my biceps, quads, chest, and forearms. The last peculiar symptom would be I've developed vitiligo on my neck which I know can be indicative of autoimmune.
The neurologist ordered labs for autoimmune, is doing an MRI of my neck to check for demyelination or a tumor. An MRI of my brain came back fairly unremarkable only showing slight neuroinflammation/encephalitis and an empty sella. I have an EMG scheduled for later in the week. Autoimmune disorders, neuro junction disorders, and MND are all on the differential. She is not suspecting it is viral or bacterial but is not ruling it out entirely. Despite treatment I still have a fairly significant Mycoplasma infection that won't go away, it's been pretty stable for 9 months.
My hope has been in the fact that given my first Bulbar symptoms were 14 months ago I figured I'd be worse off physically than I am. Everything started after a significant infection in my leg, which doesn't seem to match up with ALS. I also know given my age and previous baseline that a slow progression of Bulbar Onset isn't out of the question.
Would anyone who has experienced Bulbar Onset relate to this? Again, I'm sorry to bother you all. Transparently, I'm hoping after next week that a repeat visit to this forum isn't necessary.
Best Regards,