RV93
Member
- Joined
- Feb 17, 2021
- Messages
- 12
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- IN
- State
- MH
- City
- Mumbai
Been on this forum for almost 2 months my first post in here! First of all thank you for helping all the people who come in with queries.
Fear of respiratory als?
My history 27 year old have terrible health anxiety when my uncle was diagnosed with AML ( blood cancer ) and died within 18 days of diagnosis i had chest pain and was admitted to a hospital diagnosed with high blood pressure put on metoprolol 100 mg for 4 months and weaned off it in November 2020. Couldnt find any pathological reason for having a high bp of 170/100 at such a young age
after starting metoprolol a week or two later i developed inability to take a deep breath in which has gotten worse right now .
I went to GP 8-10 times between july to feb and saw a cardiologist couple of times during that period as well.
In jan 2021 had my first twitch in intercostal muscles which i had for a day or two and went away and then i moved to another country in feb 2021 all alone!
while staying quarantine for 14 days from mid feb to 1st march my twitches have spread everywhere although they have subsided in last couple of day with no twitch in last 2 days except some intercostal muscle twitch .
i have lost muscles since moving here but gained 2 kilos from december ! In july my weight was 74 kilos since i had high bp i intentionally wanted to lose weight and with dieting and working out for 2 months in December i weighed 66 kilos but right now it 67 kilos i used to track my body measurements since i was a regular gym goer and my size has decreased by 20-25% symmetrically my last workout was in October but i have started working out again from last week.
current symptoms
1) shortness of breath ( more like inability to take a deep breath in) since july
2) symmetrical muscle loss ( in tone but no weight loss) ( i feel pain and burning sensations in muscles and then i
3) arms feel fatigued/weak like they’ll just give up right now . ( have some calf pain as well )
4) nausea
5) back pain
6) want to lie down all day
7) stretch marks from muscle loss
8) body feels soft
9) have to gasp for air when talking continuously
10) area below chest near diaphraghm
Because of moving to another country ( singapore) i dont have an insurance so i’ll have to pay out of pocket which doctor should i go to first an appointment with a neuro the earliest available date is 21st april and with a pulmonologist which is available in Mid april . Emg cost is 300$ per limb .
English is not my first language so please excuse me.
I also know that respiratory onset below 40 is rare for an exceedingly rare disease but i have become sheep who cried wolf and no one is ready to listen to me by writing this i might have formed a bias in your minds as well but all of those symptoms are real.
do we have any posts for a young respiratory onset case?
Also forgot to mention i have a high hr while standing 90-120 which earlier used to be in 70-80s. From last 2-3 weeks i am getting up atleast once or twice every night but i have no headaches in the morning and sleeping for 6-8 hours.
Fear of respiratory als?
My history 27 year old have terrible health anxiety when my uncle was diagnosed with AML ( blood cancer ) and died within 18 days of diagnosis i had chest pain and was admitted to a hospital diagnosed with high blood pressure put on metoprolol 100 mg for 4 months and weaned off it in November 2020. Couldnt find any pathological reason for having a high bp of 170/100 at such a young age
after starting metoprolol a week or two later i developed inability to take a deep breath in which has gotten worse right now .
I went to GP 8-10 times between july to feb and saw a cardiologist couple of times during that period as well.
In jan 2021 had my first twitch in intercostal muscles which i had for a day or two and went away and then i moved to another country in feb 2021 all alone!
while staying quarantine for 14 days from mid feb to 1st march my twitches have spread everywhere although they have subsided in last couple of day with no twitch in last 2 days except some intercostal muscle twitch .
i have lost muscles since moving here but gained 2 kilos from december ! In july my weight was 74 kilos since i had high bp i intentionally wanted to lose weight and with dieting and working out for 2 months in December i weighed 66 kilos but right now it 67 kilos i used to track my body measurements since i was a regular gym goer and my size has decreased by 20-25% symmetrically my last workout was in October but i have started working out again from last week.
current symptoms
1) shortness of breath ( more like inability to take a deep breath in) since july
2) symmetrical muscle loss ( in tone but no weight loss) ( i feel pain and burning sensations in muscles and then i
3) arms feel fatigued/weak like they’ll just give up right now . ( have some calf pain as well )
4) nausea
5) back pain
6) want to lie down all day
7) stretch marks from muscle loss
8) body feels soft
9) have to gasp for air when talking continuously
10) area below chest near diaphraghm
Because of moving to another country ( singapore) i dont have an insurance so i’ll have to pay out of pocket which doctor should i go to first an appointment with a neuro the earliest available date is 21st april and with a pulmonologist which is available in Mid april . Emg cost is 300$ per limb .
English is not my first language so please excuse me.
I also know that respiratory onset below 40 is rare for an exceedingly rare disease but i have become sheep who cried wolf and no one is ready to listen to me by writing this i might have formed a bias in your minds as well but all of those symptoms are real.
do we have any posts for a young respiratory onset case?
Also forgot to mention i have a high hr while standing 90-120 which earlier used to be in 70-80s. From last 2-3 weeks i am getting up atleast once or twice every night but i have no headaches in the morning and sleeping for 6-8 hours.