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Living with an incurable condition/disease

Same here. I always crib about little pains. This thread made me realize that.

I guess its in human nature to always whine no matter what :)) the poor the rich the healthy the sick everybody has complaints. One issue replaces the other. Only when we compare our issues with others we get a better picture. Although comparing isn't advised in many cases, it does open your eyes sometimes.
 
I've had this rare condition since I was around 14- though it only pops up once in a while now. Thankfully I am able to take part in all physical activities

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Henoch-Schönlein purpura (HSP) is a rare condition in which blood vessels become inflamed. It typically results in a rash and joint and tummy pain.
HSP can affect people of any age, but the majority of cases occur in children under 10.
The medical term for inflammation of the blood vessels is vasculitis. Blood vessels throughout the body become irritated and swollen, which can cause problems such as bleeding into the skin (resulting in a rash) and occasionally problems affecting the kidneys.
HSP is not usually serious and most cases get better within a few weeks.

HSP is caused by a problem with your immune system, possibly as a result of a previous infection.
It has been known to occur after a bacterial or viral infection of the throat, airways or lungs (respiratory tract infection).
HSP cannot be spread from person to person and doesn't usually run in families.
 
I've had this rare condition since I was around 14- though it only pops up once in a while now. Thankfully I am able to take part in all physical activities

=======

Henoch-Schönlein purpura (HSP) is a rare condition in which blood vessels become inflamed. It typically results in a rash and joint and tummy pain.
HSP can affect people of any age, but the majority of cases occur in children under 10.
The medical term for inflammation of the blood vessels is vasculitis. Blood vessels throughout the body become irritated and swollen, which can cause problems such as bleeding into the skin (resulting in a rash) and occasionally problems affecting the kidneys.
HSP is not usually serious and most cases get better within a few weeks.

HSP is caused by a problem with your immune system, possibly as a result of a previous infection.
It has been known to occur after a bacterial or viral infection of the throat, airways or lungs (respiratory tract infection).
HSP cannot be spread from person to person and doesn't usually run in families.

How is your Renal function tests and Urine analysis reports?
 
I guess its in human nature to always whine no matter what :)) the poor the rich the healthy the sick everybody has complaints. One issue replaces the other. Only when we compare our issues with others we get a better picture. Although comparing isn't advised in many cases, it does open your eyes sometimes.

This.
 
I've had this rare condition since I was around 14- though it only pops up once in a while now. Thankfully I am able to take part in all physical activities

=======

Henoch-Schönlein purpura (HSP) is a rare condition in which blood vessels become inflamed. It typically results in a rash and joint and tummy pain.
HSP can affect people of any age, but the majority of cases occur in children under 10.
The medical term for inflammation of the blood vessels is vasculitis. Blood vessels throughout the body become irritated and swollen, which can cause problems such as bleeding into the skin (resulting in a rash) and occasionally problems affecting the kidneys.
HSP is not usually serious and most cases get better within a few weeks.

HSP is caused by a problem with your immune system, possibly as a result of a previous infection.
It has been known to occur after a bacterial or viral infection of the throat, airways or lungs (respiratory tract infection).
HSP cannot be spread from person to person and doesn't usually run in families.

Ive never even heard of this condition. How often does this occur though?
 
How is your Renal function tests and Urine analysis reports?

Renal function is good. The doctors told my parents that I was very lucky that my kidneys were not affected lom"ng term.

Normally when I suffer from a cold/chest infection...there will be traces of blood & protein in my urine. Anti-biotics help.
 
Ive never even heard of this condition. How often does this occur though?

Normally during a cold/chest infection. However gone are the days when my limbs used to be blanketed with rash because of leaking blood vessels.
 
Thanks for the kind words.



:)) There are a couple of people in my program with OI so there is no way you can identify me based on that alone.

Tough to hear about the condition, wish u the best for the present and future.

But on a side note. ...
Well we know u have OI and that u are brown, and u like to program and u are between 18-22 years of age, maybe someone can find you Lol

Sent from my SM-G900T using Tapatalk
 
Some of the posts on this thread put the small grievances some of us may experience into perspective, and make us realise that some of our problems are just minor irritations in the larger scheme of things. Best wishes to anyone affected by any of these incurable diseases, specially OP and [MENTION=139108]Sachin136[/MENTION]; may God be with you guys.
 
My aunt has unfortunately been diagnosed with Progressive supranuclear palsy. It is a very rare condition and no cure has been found for it.

It is similar to Parkinson disease; but life span is much short and symptoms are much worse. You slowly start to lose your balance and soon end up on a wheelchair; trouble with completing speech; can't fully express your emotions - and can only sleep for 4-5 hours. It is a very horrible condition. The worse symptom is when you can't swallow your food anymore; so you are likely to choke and this is the sole reason why life span is only 5 years [according to consultant] and 7-8 years [according to the doctors.]

Really feel sorry for her as she only has one son.

It is quite scary that there are so many rare conditions out there that we are unaware of which have no cure at all. May Allah (swt) protect, recover and help everyone out there who has the smallest of conditions, not just the rarest. Ameen.
 
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[MENTION=113824]Nikhil_cric[/MENTION]

I hope and wish that you remain healthy and get periodically better over time.

The thing with life is, that we are all living with an incurable condition called time. As we grow older, our bodies are continuing to plot our downfall. Some of us may not have any major life hampering problems but the bottom line is, at the end of the day, all of us are in the same boat.

I am not in any major physical strife right now, yet I know the fragility of my body - the weakness that it shows and the shortcomings that it possesses. Add to that the constant fear of reaching an age where the physical prowess of the body will even diminish further - all of this is increasingly difficult to handle.

I hope that you gather enough strength and that you continue to recover. Those who have also mentioned their problems and those who have referred to people who they know with such problems - I wish them all luck and hope that they get better.
 
As someone who has suffered from fibromyalgia for the last 11 years, I was wondering if there were folks on PP who have similar long term/incurable health issues. If so how have you managed to live with the condition and what adjustments have you made in your life?
Maybe a bit if an uncomfortable thread but please share your insights if possible :)

I am a patient of chronic Asthima, not curable at all. Only you can do medication e.t.c. Even inshaler e.t.c don't help me whenever i receive attack.

I spent whole childood as an ill person, couldn't do heavy work, couldn't run fast e.t.c all oily foods were banned and so much stuff. Well then i realized that i am going no where, so i deliberately started doing all other stuff which were banned for me.

I started eating all banned foods, i started roaming outside with out any face protection mask. I started visiting places with lots of pollution, initially it gave me hell of a pain and e.t.c but slowly slowly my immune system became addicted to it.
Now i can do every kind of work.
Before some years back, i became a patient of Epilepsy. So both things are un-curable, but i am living with it. Still some times i receive Asthima or Epilepsy attacks. But now i am addicted to these. And it looks like a part of my life :)
 
I am a patient of chronic Asthima, not curable at all. Only you can do medication e.t.c. Even inshaler e.t.c don't help me whenever i receive attack.

I spent whole childood as an ill person, couldn't do heavy work, couldn't run fast e.t.c all oily foods were banned and so much stuff. Well then i realized that i am going no where, so i deliberately started doing all other stuff which were banned for me.

I started eating all banned foods, i started roaming outside with out any face protection mask. I started visiting places with lots of pollution, initially it gave me hell of a pain and e.t.c but slowly slowly my immune system became addicted to it.
Now i can do every kind of work.
Before some years back, i became a patient of Epilepsy. So both things are un-curable, but i am living with it. Still some times i receive Asthima or Epilepsy attacks. But now i am addicted to these. And it looks like a part of my life :)

you are truely an inspirational person
hats off
 
to all those guys who are suffering from any kind of diseaes
May Allah heel all ur pains
Stay Strong and Be Brave [MENTION=113824]Nikhil_cric[/MENTION] and all other guys i ll keep praying for u
 
I haven't been diagnosed with any disease yet.

But I do need to go to a doctor to go get something checked out. Opinions from resident docs welcome...
So I had this sharp pain on the right side of my chest about 3 or 4 times in total last year. About 2 to 3 month gap between each incident. Last time it happened was in Nov. 2015. It started in 2014 IIRC.

So it's a sharp stinging pain in the middle/right side of my chest which have only occurred while i'm sitting on a sofa/bed. Sharp stinging sensation lasts for around 5 to 10 seconds and goes away after that.

I am 27 y/o, 5' 11", 150 lbs, with desi diet and sedentary lifestyle (software dev.)

Any opinions?

Any opinion
 
I haven't been diagnosed with any disease yet.

But I do need to go to a doctor to go get something checked out. Opinions from resident docs welcome...
So I had this sharp pain on the right side of my chest about 3 or 4 times in total last year. About 2 to 3 month gap between each incident. Last time it happened was in Nov. 2015. It started in 2014 IIRC.

So it's a sharp stinging pain in the middle/right side of my chest which have only occurred while i'm sitting on a sofa/bed. Sharp stinging sensation lasts for around 5 to 10 seconds and goes away after that.

I am 27 y/o, 5' 11", 150 lbs, with desi diet and sedentary lifestyle (software dev.)

Any opinions?

Any opinion

Do you feel the pain on touch? Does the pain go away when you change your position? Do you have sweating related to it? Breathlessness with it? Is the pain localised or radiate somewhere else in the body?
 
Do you feel the pain on touch? Does the pain go away when you change your position? Do you have sweating related to it? Breathlessness with it? Is the pain localised or radiate somewhere else in the body?

no pain on touch.
doesn't go away with changing position. Goes away by itself after around 5 seconds. Although I try to stay still since it's sharp stinging pain.
no sweating and no breathlessness associated with it.
It's localized to that one single 1 square inch area and NO it does Not radiate anywhere else.
 
Some real inspirational people here. Life can be cruel sometimes. Hang in there wishing y'all all the best. Good luck with every thing.
 
[MENTION=113824]Nikhil_cric[/MENTION]

I hope and wish that you remain healthy and get periodically better over time.

The thing with life is, that we are all living with an incurable condition called time. As we grow older, our bodies are continuing to plot our downfall. Some of us may not have any major life hampering problems but the bottom line is, at the end of the day, all of us are in the same boat.

I am not in any major physical strife right now, yet I know the fragility of my body - the weakness that it shows and the shortcomings that it possesses. Add to that the constant fear of reaching an age where the physical prowess of the body will even diminish further - all of this is increasingly difficult to handle.

I hope that you gather enough strength and that you continue to recover. Those who have also mentioned their problems and those who have referred to people who they know with such problems - I wish them all luck and hope that they get better.
[MENTION=138379]#GreenRoars[/MENTION]

Thank you guys and Roary I'm saddened to hear about your condition. I never knew but it looks you're one helluva strong character :)
 
I am a patient of chronic Asthima, not curable at all. Only you can do medication e.t.c. Even inshaler e.t.c don't help me whenever i receive attack.

I spent whole childood as an ill person, couldn't do heavy work, couldn't run fast e.t.c all oily foods were banned and so much stuff. Well then i realized that i am going no where, so i deliberately started doing all other stuff which were banned for me.

I started eating all banned foods, i started roaming outside with out any face protection mask. I started visiting places with lots of pollution, initially it gave me hell of a pain and e.t.c but slowly slowly my immune system became addicted to it.
Now i can do every kind of work.
Before some years back, i became a patient of Epilepsy. So both things are un-curable, but i am living with it. Still some times i receive Asthima or Epilepsy attacks. But now i am addicted to these. And it looks like a part of my life :)
I just love the fact that you are so positive.God bless you. With this attitude you will always find success in life.
 
you are truely an inspirational person
hats off

[MENTION=138379]#GreenRoars[/MENTION]

Thank you guys and Roary I'm saddened to hear about your condition. I never knew but it looks you're one helluva strong character :)

I just love the fact that you are so positive.God bless you. With this attitude you will always find success in life.

Haha thanks guys, these things are part of life. I don't hate them, i live with them. And btw i believe " Too much of a good thing is a bad thing " :)))

Btw, thanks for your well wishes guys. Stay bless all of you.
 
no pain on touch.
doesn't go away with changing position. Goes away by itself after around 5 seconds. Although I try to stay still since it's sharp stinging pain.
no sweating and no breathlessness associated with it.
It's localized to that one single 1 square inch area and NO it does Not radiate anywhere else.

Well no need to panic about this type of pain at all. It can be related to indigestion like acid reflux.

You should visit a doctor though.
 
no pain on touch.
doesn't go away with changing position. Goes away by itself after around 5 seconds. Although I try to stay still since it's sharp stinging pain.
no sweating and no breathlessness associated with it.
It's localized to that one single 1 square inch area and NO it does Not radiate anywhere else.

Most probably acidity try Apple cider vinegar in extremely diluted form also I'm in IT as well and tbh a lot of people after 6-7 years suffer heavily here because they don't exercise at all and some of them get an heart attack before 40 itself.
Take care of yourself on that front I'm sure there is time to exercise even if its only 3 times a week.
 
I am a patient of chronic Asthima, not curable at all. Only you can do medication e.t.c. Even inshaler e.t.c don't help me whenever i receive attack.

I spent whole childood as an ill person, couldn't do heavy work, couldn't run fast e.t.c all oily foods were banned and so much stuff. Well then i realized that i am going no where, so i deliberately started doing all other stuff which were banned for me.

I started eating all banned foods, i started roaming outside with out any face protection mask. I started visiting places with lots of pollution, initially it gave me hell of a pain and e.t.c but slowly slowly my immune system became addicted to it.
Now i can do every kind of work.


Before some years back, i became a patient of Epilepsy. So both things are un-curable, but i am living with it. Still some times i receive Asthima or Epilepsy attacks. But now i am addicted to these. And it looks like a part of my life :)

Stay strong bro ...
just a question, can the same applies to other kind of Incurable condition ? ....
 
Stay strong bro ...
just a question, can the same applies to other kind of Incurable condition ? ....

I can't say for others, i only believe one thing. The thing which breaks you, stand in front of it. It will break you again and again, but one day it won't be able to break you.

In humans main thing is our immune system, make your immune system stronger so it may fight. And i did the same thing, because in child hood i was like a hospital kid, even a teacher slapped me on the back and i fainted :))

When you know that you can't solve problem, then stand in front of it. At least, it won't trouble you and will increase happiness of your life.
 
I can't say for others, i only believe one thing. The thing which breaks you, stand in front of it. It will break you again and again, but one day it won't be able to break you.

In humans main thing is our immune system, make your immune system stronger so it may fight. And i did the same thing, because in child hood i was like a hospital kid, even a teacher slapped me on the back and i fainted :))

When you know that you can't solve problem, then stand in front of it. At least, it won't trouble you and will increase happiness of your life.

hmmmmm Positive thinking ..... :)
 
Living with a lifelong condition lets you have certain meds... which others want for recreational use :P.
Alas, its no fun when you actually need it.
 
Oh they want me to work night shifts man. I don't think I can do that. Its gonna be too taxing I guess.

But how did the whole interview process go? Are u confident now of future interview. Exactly what position did u apply for ? If you don't mind me asking.
 
Stay strong and good luck!

Hope you all are able to enjoy a nice and prosperous life!
 
But how did the whole interview process go? Are u confident now of future interview. Exactly what position did u apply for ? If you don't mind me asking.

Actually I was called by this firm for a data analytics(no clue what that is) job after seeing my profile on Monster. So when I did go there they mentioned that I may have to work night shifts and I mentioned my condition. Pretty much ended there. Sorry for the late reply niishaa . I missed your post .
 
Yes, one of the moderate types. However, I don't have many of the symptoms that are usually associated with this type of Osteogenesis Imperfecta like short stature, fractures at birth etc.

Best of luck, buddy! I'm glad it's not too severe.
 
I am a patient of chronic Asthima, not curable at all. Only you can do medication e.t.c. Even inshaler e.t.c don't help me whenever i receive attack.

I spent whole childood as an ill person, couldn't do heavy work, couldn't run fast e.t.c all oily foods were banned and so much stuff. Well then i realized that i am going no where, so i deliberately started doing all other stuff which were banned for me.

I started eating all banned foods, i started roaming outside with out any face protection mask. I started visiting places with lots of pollution, initially it gave me hell of a pain and e.t.c but slowly slowly my immune system became addicted to it.
Now i can do every kind of work.
Before some years back, i became a patient of Epilepsy. So both things are un-curable, but i am living with it. Still some times i receive Asthima or Epilepsy attacks. But now i am addicted to these. And it looks like a part of my life :)

Don't worry, Tony Greig and Jonty Rhodes both lived with epilepsy, and a great many people live with asthma. I wish you a healthy and happy life!
 
Bump. Gotta say things have changed rapidly in the last two years. [MENTION=76058]cricketjoshila[/MENTION] I don't know if you remember this but recently I went to a doctor and apparently I don't have fibromyalgia anymore as I don't satisfy the criteria. I was on Ayurvedic medication for two years. I thought fibromyalgia was incurable? Has this happened before?
 
Bump. Gotta say things have changed rapidly in the last two years. [MENTION=76058]cricketjoshila[/MENTION] I don't know if you remember this but recently I went to a doctor and apparently I don't have fibromyalgia anymore as I don't satisfy the criteria. I was on Ayurvedic medication for two years. I thought fibromyalgia was incurable? Has this happened before?

Can ayurvedic medicine help people with hypothroidism?
 
Can ayurvedic medicine help people with hypothroidism?

I think you should try it. Whatever gives you relief of course. But the person I was going to in my native in Kerala passed away last year. You might want to do some research and then go meet.
 
Hypothyroidism. Even with the correct level of medication to alleviate the more debilitating symptoms, it’s very difficult to keep the weight off. Booooo.
 
Bump. Gotta say things have changed rapidly in the last two years. [MENTION=76058]cricketjoshila[/MENTION] I don't know if you remember this but recently I went to a doctor and apparently I don't have fibromyalgia anymore as I don't satisfy the criteria. I was on Ayurvedic medication for two years. I thought fibromyalgia was incurable? Has this happened before?

Nice. Keep getting better :messi
 
Hypothyroidism. Even with the correct level of medication to alleviate the more debilitating symptoms, it’s very difficult to keep the weight off. Booooo.

Yup that is the harsh truth.
 
Yup that is the harsh truth.

My mother and grandmother both had it for life, so it’s genetic for me.

Every day pre-diagnosis I used to sweat horrendously despite not being particularly warm, and I would get epic stomach cramps along with bloating - not to mention the deeply unpleasant fatigue, depression, anxiety and general “brain fog” that would lead to frequent panic attacks.

My thyroxine is at a very stable level now, so I have no symptoms whatsoever - my digestive system and body temperature are both in reasonable working order now, my mental health is massively better, and physically I have no concerns - apart, of course, from being annoyingly overweight.
 
Can ayurvedic medicine help people with hypothroidism?

I would stick to medication. As it's a must hormone for daily functioning. Our own immune cells attack thyroid glad's cell. So, you need a replacement.
 
I would stick to medication. As it's a must hormone for daily functioning. Our own immune cells attack thyroid glad's cell. So, you need a replacement.

I am taking thyroxine supplement and according to doc, i will have to take thyroxine for life but it is getting rather tiring. It is as if I am 50 years old after this disease.
 
My mother and grandmother both had it for life, so it’s genetic for me.

Every day pre-diagnosis I used to sweat horrendously despite not being particularly warm, and I would get epic stomach cramps along with bloating - not to mention the deeply unpleasant fatigue, depression, anxiety and general “brain fog” that would lead to frequent panic attacks.

My thyroxine is at a very stable level now, so I have no symptoms whatsoever - my digestive system and body temperature are both in reasonable working order now, my mental health is massively better, and physically I have no concerns - apart, of course, from being annoyingly overweight.

My main concern is the effect it has had on my digestive system. Before thyroid, I never had digestion issues. How did you improve that aspect?
 
I am taking thyroxine supplement and according to doc, i will have to take thyroxine for life but it is getting rather tiring. It is as if I am 50 years old after this disease.

Don't be overwhelmed by 'have to take it for life'. I know it can be tiresome and you need to remember it. You have to take it where ever you travel. But you need it. Many cells in the body function well because of the thyroid hormone. It's essential for many process.

Destruction of thyroid gland remains constant, and we don't regrow thyroid gland. Key is to manage symptoms = no disease. Your Dr. can manage dose so have a tsh be checked every 6 months and discuss your symptoms with endocrinologist so they can change dose to manage.

Problem with Aryuvedic is there is no prove data, and they won't provide you with essential hormone you need. What dose are you on?
 
My main concern is the effect it has had on my digestive system. Before thyroid, I never had digestion issues. How did you improve that aspect?

if you are getting either constipation or loose bowel then discuss this with your Dr. might just need some dose adjusting.
 
Don't be overwhelmed by 'have to take it for life'. I know it can be tiresome and you need to remember it. You have to take it where ever you travel. But you need it. Many cells in the body function well because of the thyroid hormone. It's essential for many process.

Destruction of thyroid gland remains constant, and we don't regrow thyroid gland. Key is to manage symptoms = no disease. Your Dr. can manage dose so have a tsh be checked every 6 months and discuss your symptoms with endocrinologist so they can change dose to manage.

Problem with Aryuvedic is there is no prove data, and they won't provide you with essential hormone you need. What dose are you on?

100mg prescribed right now. Will go for tests after three months and then doctor will suggest whether to keep the same dosage or increase it.
 
My main concern is the effect it has had on my digestive system. Before thyroid, I never had digestion issues. How did you improve that aspect?

100MCG daily dose is quite a lot. If your digestive system is working either too quickly or too slowly, you might be on too much. 2 years ago I was on 50MCG which was not enough and caused my overall health to deteriorate even further than pre-diagnosis. It’s a very delicate balance.

75MCG is a brilliant dose to be on, I have been on this for 18 months and have a great day-to-day life now. Have a chat with your doctor.

The management of the appetite and waistline, 8 years after diagnosis, remains a total mystery to me though. Sometimes I pile through loads of food and drink and it has no effect - other weeks I will eat light, and gain weight.

I don’t think even the medical profession truly understands hypo / hyper thyroidism and the thyroid gland yet. There has even been a formal study conducted in the Netherlands that found a firm link between hypothyroidism in men and extended life expectancy, which I found quite stunning.

In addition to getting your thyroxine levels stable and correct, if your digestive system is playing up I would also eliminate processed meat consumption, and give up both tobacco and alcohol if that applies to you. Easier said than done, but I can confirm from personal experience that this makes a massive difference.
 
I’m on 75mcg and have been since 2008.

Discovered when I flew back from a business trip in Hong Kong and couldn’t walk straight, had slurred speach and basically had massive balance issues. I can only describe it as being in a permanent state of drunkenness..

First diagnoses was middle ear infection but after a week of meds nothing changed.

Referred to a neurologist who performed MRI’s, EEG’s, Balance Tests etc etc.
Finally a lumber puncture which showed I had bacteria at the back of the brain, I.e serabella syndrome.
By this time 3 months had elapsed and it was already leaving my system so thankfully I didn’t have to go on steroids...

During all this the blood tests revealed I had an under active thyroid and my immunity was low because of it. My body couldn’t deal with a simple infection and hence it went to the brain.

What followed was intensive physio to get me walking straight again and of course thyroxin..

Now whenever I meet someone who tells me they’re tired all the time or keep getting colds, putting on weight etc I recommend them to get a simple blood test for thyroid.
 
Bump. Gotta say things have changed rapidly in the last two years. [MENTION=76058]cricketjoshila[/MENTION] I don't know if you remember this but recently I went to a doctor and apparently I don't have fibromyalgia anymore as I don't satisfy the criteria. I was on Ayurvedic medication for two years. I thought fibromyalgia was incurable? Has this happened before?

R u saying all that fatigue/muscle pain is gone??
 
Yep. I don't have fatigue or muscle pain anymore. Or any of the other symptoms for that matter.

Wow bro.

Congratulations.

Sounds like a miracle tho. I mean I'm pretty sure most allopathic doctors believe Ayurveda to be pseudoscience, right?
 
Wow bro.

Congratulations.

Sounds like a miracle tho. I mean I'm pretty sure most allopathic doctors believe Ayurveda to be pseudoscience, right?

Yep. It's considered a pseudoscience. I never believed in any of it myself. But after two years of medication i guess i'm pretty happy with the results
 
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