Respiratory onset age 27 male. Never smoked.

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RV93

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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.
 

lgelb

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Blood pressure typically drops when heart rate rises and vice versa, to keep the blood flow up. Orthostatic hypotension (blood pressure drop when you change position, which will elevate your heart rate) such as you may describe is best addressed by an internist or cardiologist, and can relate to everything you report. There are drugs, exercises and dietary regimens that can help. When you feel bad, you will naturally move around less, which of course affects muscle tone.

Meanwhile, I would make sure you are well-hydrated, check the electrolyte balance in your diet, and be mindful in terms of processed sugars and spacing out fats. I would try to change positions frequently, stretch, etc.

I would not see any point to wasting your $ on an EMG at this point, since nothing you've said sounds neurologic.

Best,
Laurie
 

RV93

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Hey Laurie,

thanks for your reply. I am so sorry to bother you i am thinking of buying a spirometer which will cost 20-30$ vs a pulmonologist which will cost 200-300 dollars
But i am baffled not looking for a diagnosis here but

1) Inability to take a deep breath i feel it gets stuck in my throat
2) intercostal muscle twitch and the area there as become bony
3) twitching body wide
4) getting up in night once or twice regularly
5) perceived weakness in arms and legs ( my cardiologist said my autonomous nervous system is going overboard )
6) nausea
7) gaspin for air while talking
8) on and off back pain and fatigue
 

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The autonomic nervous system is that which is involved in the blood pressure/pulse regulation, as your cardiologist says, yes. Perhaps a trial of a low dose blood pressure medication (antihypertensive, such as a beta blocker or calcium channel blocker) that can reduce heart rate somewhat is indicated. I would ask about that.

Not everything you list is necessarily important, let alone related. Since you have moved, I would also find a good internist to make a plan with, to discover what is due to the cardiac aspects and/anxiety at this stage (which may involve counseling and/or medication). What is left, if anything, you can then address.
 

RV93

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Laurie here is the interesting part in july when i had anxiety probably some autonomous dysfunction my blood pressure was 170/100 i have been checking it from last couple of days its normal 115/75-120/80 thats all . Breathing and GI issues have worsened . I have noticed chest doesnt move or does slightly when i am breathing in supine or standing position. I dont get shortness of breath as such but i cannot a deep breath fully in and i feel my intercostal muscles have shrunk along with a weakened diaphragm. At night i cannot sleep sometimes feeling i am not breathing correctly but my spo2 is between 93-97 and i get up too often as well during night. Also got this buddha belly i know attaching picture is inappropriate so i am not doing that. Two options that i currently have is to seek a neuro/pulmonologist here or move back to India but i am afraid if i fly something could go wrong with my breathing

i am sorry to ask but were there any cases of resp als under 30?
 

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I have not heard of any, but then respiratory onset is only ~1% of cases and of course ALS is very rare <30. So you can do the math.
Early ALS does not affect oxygen levels. If you have anything related to both lungs and sleep, it is most likely sleep apnea. There are at-home sleep tests these days, and for a start you can video yourself sleeping to see if you stop breathing or gasp for breath.
 

RV93

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I have also noticed that my chest doesn't rise while breathing ! Also, have perceived weakness in my right hand fingers! What worries me is this started probably as autonomic dysfunction since my bp was 170/100 and i was on 100 mg metoprolol and 5 days later weird breathing issues started! Cardiologist and GPs told me its because of anxiety but none of them offered even a basic xray for chest! For blood pressure i had doppler done for abdomen , liver , pelvis and kidneys they even did a 24 hour urine test to check for tumor in kidney . Couldnt find anything . I feel totally lost and being young i know the odds are in my favour thats why no one takes me seriously but honestly these symptoms are debilitating .
 

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These are issues you need to bring up with your doctors. I think you may have accidentally stumbled upon a site for those with ALS as you have not one single ALS symptom that those with ALS experience. ALS patients, at least not my husband, have chest x,-rays to determine if their diaphragm muscles have been affected by the disease.

Why are you looking so hard at a disease that many, many people say you do not have? It's best you bring your health anxiety issues to a professional, not to dying people. It's kinda cruel to expect someone with ALS to sooth your issues. They have enough going on in their life as do their caregivers.

Good luck to you and take good care.
 

RV93

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Hello,
I am so sorry i never meant to bother you guys so much. Since respiratory onset is rare and people here are so much aware i thought i should ask for their opinion . Just one last thing if anybody can help will the emg of all 4 limbs help detect if something is wrong with chest/intercostal muscles/ diaphragm muscle. Thank you so much.
 

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Yes. Take good care and best of luck to you. You've added and added to your litany of questions, so there's really nothing more anyone can say. You don't have ALS, so please stop trying to get an ALS diagnosis. There's no need for you to be on this forum any longer.

Again, best of luck to you and take good care.
 

RV93

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Update : spoke with neuro yesterday online consultation he told me to come back to India for clincal and emg as well. Will keep you guys posted. With 200k cases daily in India and i hope i dont have any complication from hyper capnia while flying. Hope to keep you guys posted.
 

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Please update AFTER all appointments have been completed and a diagnosis (it will not be ALS but it's good for other posters to see this) has been given. No need to update every conversation with each doc.

Look forward to hearing back from you in a few months when all appointments have been fully completed.
 

RV93

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Hello i have had emg results for all 4 limbs i have received the report but yet to see the doctor but my motor units dont seem to uniformly close together at contraction!
B6A4834E-8E16-46F1-99C5-C6A3E1C338AD.jpeg
C44D02DC-2518-404B-99D4-3E4B3C676A55.jpeg
BF32A7AF-5BEA-4927-9B5F-703F4CEBAC34.jpeg
 

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Can you post the part of the report that has words and tables? Of course, obscure your details. Thanks.
 

RV93

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Sure attaching here for your reference.
C752CF30-D754-4DB9-93AD-92A6F15598D2.jpeg
919A619A-805B-46C3-8FE3-3F19700D0C19.jpeg
 
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