Elizabethm12
Member
- Joined
- Jun 5, 2018
- Messages
- 10
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- UK
- State
- UK
- City
- Liverpool
Hello All. I’ve thought long and hard before posting this as I’m very much aware of the daily struggles a lot of you here face. I am however finding myself on this site more and more frequently and feel untill I have my questions answered from people with real life experiences - only then will I rest.
Basic background: 21 year old female financial advisor from the UK. Gave birth to my first baby 9 weeks ago. Usually in perfect health, fit and active.
I found around 4 weeks post partum I began with odd sensations around my face mostly resting around my chin and side of my lips. Also my cheeks feel the same sensation throughout the day. It feels almost as if I’ve been numbed by a dentist and it’s starting to wear of? Bizzare I know but no other way to describe really. As well as this I began with bodywide twitching (most likely bfs as it’s widespread) and an usual overwhelming fatigue in all of my muscles followed by a ‘perceived weakness’ in my right hand. Found my fingers were stiff when trying to tie my shoelaces and clean my daughters bottles.
Went to GP and had full exstensive blood work complete - all normal except folate on lower side as well as iron (birth to blame for this) my levels have now come back up to normal and symptoms still remain. I’m taking specialised multivitamins in an attempt to regulate my salts etc after the birth incase this can attribute to my symptoms.
What is concerning me most is my throat and tongue. The odd sensation I have around my face feels like it is also around the bottom of my throat almost where the voice box is. My throat twitches regularly and I feel my tongue at rest is also twitchy. I’ve met with a neurologist who has completed head MRI, CT head and auto immune bloods all come back normal - thankfully. I have also had 2 EMG’s and NCS completed. Very thorough, all limbs on both sides as well as tongue, under chin and inside tongue and at the side of my neck. All of which come back normal - very reassuring! I am now however experiencing subtle changes to my speech. It is not noticeable to my closest friends and family. Swallowing feels hard but is not bothering and liquids go down with no problems. When I am speaking I notice a squeaking from my nose (probably unrelated) and I feel like speaking is an effort. I’ve mentioned all of this to my neuro and he feels it’s probably a symptom of anxiety even though I feel sure it isn’t. I also cannot stop yawning, some would say this is excessive. I find myself yawning close to 20 times in half an hour with no relief. I notice I also keep getting the urge to cry my eyes out at the smallest thing. I can control this thougj and often can hold back tears. Could this be the start of emotional lability? I’ve read a few posts whereby subtle mood changes along with yawning have been very early symptoms in hindsight. I have however had the advantage of having diagnostic testing (emg etc) very early into my symptoms. What are your thoughts on this? Is there ever a ‘too early’ to rule out bulbar onset als?
If there was something sinister (even in its earliest stages) would this show up on an EMG?
I feel my age puts the odds on my side but when the small chance is still there I suppose us anxious folk cling onto it like a leach. I am trying my hardest to be positive and focus on my gorgeous little baby but my symptoms around my throat, tongue and face are bothering me and I can’t shake it.
I’m sorry if I have offended or annoyed anybody with my long winded post. I’m not looking for a diagnosis here - Although the neuros are the experts, the real life people dealing first hand with this disease in my eyes are the ones with the most useful information. Thank you for taking the time to read my post.
Morgan
Basic background: 21 year old female financial advisor from the UK. Gave birth to my first baby 9 weeks ago. Usually in perfect health, fit and active.
I found around 4 weeks post partum I began with odd sensations around my face mostly resting around my chin and side of my lips. Also my cheeks feel the same sensation throughout the day. It feels almost as if I’ve been numbed by a dentist and it’s starting to wear of? Bizzare I know but no other way to describe really. As well as this I began with bodywide twitching (most likely bfs as it’s widespread) and an usual overwhelming fatigue in all of my muscles followed by a ‘perceived weakness’ in my right hand. Found my fingers were stiff when trying to tie my shoelaces and clean my daughters bottles.
Went to GP and had full exstensive blood work complete - all normal except folate on lower side as well as iron (birth to blame for this) my levels have now come back up to normal and symptoms still remain. I’m taking specialised multivitamins in an attempt to regulate my salts etc after the birth incase this can attribute to my symptoms.
What is concerning me most is my throat and tongue. The odd sensation I have around my face feels like it is also around the bottom of my throat almost where the voice box is. My throat twitches regularly and I feel my tongue at rest is also twitchy. I’ve met with a neurologist who has completed head MRI, CT head and auto immune bloods all come back normal - thankfully. I have also had 2 EMG’s and NCS completed. Very thorough, all limbs on both sides as well as tongue, under chin and inside tongue and at the side of my neck. All of which come back normal - very reassuring! I am now however experiencing subtle changes to my speech. It is not noticeable to my closest friends and family. Swallowing feels hard but is not bothering and liquids go down with no problems. When I am speaking I notice a squeaking from my nose (probably unrelated) and I feel like speaking is an effort. I’ve mentioned all of this to my neuro and he feels it’s probably a symptom of anxiety even though I feel sure it isn’t. I also cannot stop yawning, some would say this is excessive. I find myself yawning close to 20 times in half an hour with no relief. I notice I also keep getting the urge to cry my eyes out at the smallest thing. I can control this thougj and often can hold back tears. Could this be the start of emotional lability? I’ve read a few posts whereby subtle mood changes along with yawning have been very early symptoms in hindsight. I have however had the advantage of having diagnostic testing (emg etc) very early into my symptoms. What are your thoughts on this? Is there ever a ‘too early’ to rule out bulbar onset als?
If there was something sinister (even in its earliest stages) would this show up on an EMG?
I feel my age puts the odds on my side but when the small chance is still there I suppose us anxious folk cling onto it like a leach. I am trying my hardest to be positive and focus on my gorgeous little baby but my symptoms around my throat, tongue and face are bothering me and I can’t shake it.
I’m sorry if I have offended or annoyed anybody with my long winded post. I’m not looking for a diagnosis here - Although the neuros are the experts, the real life people dealing first hand with this disease in my eyes are the ones with the most useful information. Thank you for taking the time to read my post.
Morgan
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