diaries of diseases

[جوري]

I wanted if you'd all come forth and tell me of your stories of misdiagnosis and how you've recovered..This is a topic dear to my heart as I can sympathize with both sides.. (I value immensely) a program called 'Mystery diagnosis' for it sheds lights on some of the more obscure diseases in medicine..

recently an episode on Moyamoya

[MEDIA]http://www.youtube.com/watch?v=2XqhzoPusVA[/MEDIA]

Not the first differential that comes to mind.. but even so, not merely the very rare diagnosis but even common ones..

when I was about 6~7, I came down with 'Scarlet Fever' and was erroneously diagnosed as having the common cold.. then this disease if goes undiagnosed long enough it causes 'Rheumatic heart disease' we are certainly lucky in a way that in the days of yore contracting any disease could spell a death sentence and hence women died in child birth and children didn't survive past the age of 7 at times... nonetheless many people go on being erroneously diagnosed or not diagnosed all together modern day.. and so I'd like to learn from you, where your doctors have gone wrong, and how you knew (if you knew) that something was terribly wrong and that the doctor had made a mistake to warrant a second opinion..

thank you..


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[جوري]

BTW. I just want to point out that the child in the video also has down's syndrome and want to point out, what a blessing it is to have a child for all those who think that having a child with special needs is a curse to consider the many people struggling and spending all their savings to have a loving child in their lives.. (but that is a digression from the purpose of this thread) carry on..

 

[Life_Is_Short]

I have never heard of Moyamoya. I have never had any serious problems. Alhamdulilah :statisfie. Grandma once tried 'alternative' medicine when i had a very bad case of sore throat but i knew i needed proper medicine and so i contacted a doctor. ;D

I have a question:

Isn't diagnosis based on a collaborative decision of many medical professionals (especially in the case of a serious disease) ? How comes they didn't recognise it? :hmm:

 

[جوري]

I have never heard of Moyamoya. I have never had any serious problems. Alhamdulilah :statisfie. Grandma once tried 'alternative' medicine when i had a very bad case of sore throat but i knew i needed proper medicine and so i contacted a doctor. ;D

I have a question:

Isn't diagnosis based on a collaborative decision of many medical professionals (especially in the case of a serious disease) ? How comes they didn't recognise it? :hmm:

a diagnosis is made by the doctor you see, if you need a referral because what you suffer is outside of someone's expertise then you see another physician that specializes in what it is that ails you.. for instance if you show up with what one doctor diagnosis as advanced lyme dz because it presents with a certain set of sx. but you don't respond to treatment and it and he suspects that it is neurological in origin maybe a what he deems a hypothalamic dysfunction but can't quite put a name to it, so he refers you and then the neurologist may come up withe the DX. of let's say Kleine–Levin syndrome which is very rare, for sure your GP wouldn't come up with such a diagnosis without referring you to a neurologist, though he is suspicious and advanced lyme may certainly present similarly, and him stating that you have a hypothalamic dysfunction is certainly not untrue, someone very specialized in said failed can then take over and nail the diagnosis..


I am very against holistic medicine unless it is prophetic medicine but should certainly be supplemented with modern science. since to every disease there is a cure.. I am baffled as to why some deem everything jinn or devils or black magic.. sob7an Allah.. did the folks back in the prophet's day forgo medicine and call everything the 'evil eye' .. anyhow I am digressing from the topic.. I do hope more folks come up with more stories insha'Allah

 

[Asiyaah]

My life has been greatly affected by a misdiagnoses. When I was a teenager my dad came down with what appeared to be a horrible flu. He was a seemingly healthy 52 year old. Has be became sicker and sicker my mom kept taking him to the ER and our family doctor at the time, and they kept sending him home saying it was only the flu and he needs Tylenol and rest. This was between the span of Christmas and New years. My dad got worse and worse, he was coughing up blood. After a few more trips to the doctors and hospital still being sent home, this time being told he had pneumonia. Then on the 11 of January my mom begged ER to take him and they did. They did a lung xray and asked my mom if he was a heavy smoker. My dad didn't smoke at all. The hospital told my mom they were gonna send my dad to a better hospital the next day. That night he died The autopsy revealed he had an aneurysm in his chest. His death could have been prevented if the doctor bothered to run tests, or if the ER accepted him weeks before. I never had a good relationship with my dad as I was a 'bad' teenager. I never got to have an adult relationship with him. He never got see that I changed my ways. We weren't on good terms before he passed I honestly blame Mike Harris (former premier of Ontario which took tons of money out of our health care system) for his death, along with the doctor and the hospital.

 

[جوري]

wow sis.. I am very sorry to hear that what a grievous event.. I know that to be a very serious problem with 'socialized' medicine, to have high suspicion is for someone to drop dead before your eyes otherwise everything is deemed under some broad brush.. I really worry that, that will be the case here in the U.S too, if I actually understood the 800-1000 pg. proposition of obama.. thankfully that has been put on hold indefinitely.. everyone who takes that seat has to do so much carnage.

I don't agree with many things in the current system but guarantee that someone who is a smoker and over fifty will at least get a basic workup which includes an EKG, TSH, CBC, chemistry, Xray, and a baseline colonoscopy .. sob7an Allah.. what a senseless loss ..

 

[Asiyaah]

I agree socialized medicine is far from perfect. However even so I do believe the canadian health care system is better than what the americans have. I couldn't imagine having to pay to see a doctor. But on the other hand if you have top-notch insurance in the US you will give receive the best of care.

 

[جوري]

so true, I ended up with a $1500 bill once for a very painful migraine, couldn't believe the my medical bill when it arrived, and I was actually protesting that day, that I didn't get a workup.. how grateful was I after the bill that I didn't insist on any special tests...

 

[CosmicPathos]

double post ....

 

[CosmicPathos]

a certain member in my family was always misdiagnosed with headaches in one half of his brain. He went to at least 20 different allopathic physicians in Saudi Arabia and no one could pin point the cause. They would give him some medications which would temporarily solve the problem only for it to re-emerge. It was so extreme that once we were driving to Makkah from Riyadh that he had to stop on the side of the road to have rest because it was unbearable for him to concentrate driving at night .....

He went to a Hakeem from Hamdard University in Karachi Pakistan and he gave him a specialized alternative medication. Since then its been years and he has never complained of this head ache. He does not take the medication anymore. Allhamdulillah, praise be to Allah.

It all boils down to homeopathic vs allopathics. I lean more towards the later, obviously but this personal experience with the former has made me question my stern opposition.

 

[جوري]

masha'Allah and sob7an Allah..
do you know what he actually had?
what was the alternative medicine that was used on him?
I am a chronic migraine sufferer myself except with me it is hormone related, and sometimes they can be quite unbearable for me, that even the slightest sound or light is like a knife stabbing through me..

your dad sounds like he suffered from cluster headaches though, they quite differ from migraines..

 

[CosmicPathos]

masha'Allah and sob7an Allah..
do you know what he actually had?
what was the alternative medicine that was used on him?
I am a chronic migraine sufferer myself except with me it is hormone related, and sometimes they can be quite unbearable for me, that even the slightest sound or light is like a knife stabbing through me..

Homeopaths have "weird" theories ;D but the doc told him that there was something wrong in his digestive system/liver which was giving him these kind of headaches. I can ask him the name of the thing. The thing though is that its a personalized medicine based on your other qualities so you have to meet one doc to get personalized to yours. Plus they do some dua on it.

 

[جوري]

Homeopaths have "weird" theories ;D but the doc told him that there was something wrong in his digestive system/liver which was giving him these kind of headaches. I can ask my dad the name of the thing. The thing though is that its a personalized medicine based on your other qualities so you have to meet one doc to get personalized to yours. Plus they do some dua on it.

cluster headaches are treated with 100% oxygen in fact, that is curative in most cases..

I am always so disappointed in homeopathic medicine.. I believe in du3a of course, but some of the lunacies people allege and the even more crazy treatments.. I have considered acupuncture for my migraines, but for those exact reasons I'd always change my mind.. I think I'll take my chances with the usual meds. than some bizarre concoction...

it is never like the movies an open pagoda over looking a garden while the mind and body heal..

bah humbug

 

[CosmicPathos]

masha'Allah and sob7an Allah..
do you know what he actually had?
what was the alternative medicine that was used on him?
I am a chronic migraine sufferer myself except with me it is hormone related, and sometimes they can be quite unbearable for me, that even the slightest sound or light is like a knife stabbing through me..

your dad sounds like he suffered from cluster headaches though, they quite differ from migraines..

may Allah make it easy for you, i know how almost impossible it is to live with chronic conditions. I myself have had chronic scalp folliculitis for years which started in late teens .... and has continued on .... the only remedy? Antibiotics! Been on them for years to the extent that tetracycline became useless for me due to resistance ..then went on accutane, the doc had to stop it due to my severe head aches 2 months into the course + i had become depressed! He asked to get my brain ct scan done and the 2 weeks in which those results came were hell for me, I seriously believed that i have a brain tumor .....tough times.... Allhamdulillah got a chance to visit Saudi last year ... living in a different weather changed things on my scalp ... now its way less + got found that topical antibiotics are much better ... allhamdulillah.

 

[جوري]

may Allah make it easy for you, i know how almost impossible it is to live with chronic conditions. I myself have had chronic scalp folliculitis for years which started in late teens .... and has continued on .... the only remedy? Antibiotics! Been on them for years to the extent that tetracycline became useless for me due to resistance ..then went on accutane, the doc had to stop it due to my severe head aches 2 months into the course + i had become depressed! He asked to get my brain ct scan done and the 2 weeks in which those results came were hell for me, I seriously believed that i have a brain tumor .....tough times.... Allhamdulillah got a chance to visit Saudi last year ... living in a different weather changed things on my scalp ... now its way less + got found that topical antibiotics are much better ... allhamdulillah.

sorry to hear that akhi.. any reason you can't go on isotretinoin? I think that would be far more effective than the tetra.

and Allah swt knows best

 

[جوري]

woops scratch that, I just read 'accutane' that is iso. I am so accustomed to using generic names..
anyhow you might also want to wash with anti-fungal shampoos as there is more than one component to folliculitis ..

 

[sevgi]

Salams sis,

I actually have quite a history of medical failure in my family but I wouldnt call them misdiagnosis.

However, I have an issue plaguing me at the moment. My mother has had a condition for a while now. Ive been making her go to doctors but they just refuse to diagnose her at all! Ive booked her in again this Tuesday at the medical centre/pharmacy I work at.

My mum has taken ultrasounds and CT's of the affected area and all doctors can say is "we dont know what it is...it may be this or it may be that...go home and if it doesnt go away, come back" Im fed up with it. The condition is getting worse and Im worried.

 

[جوري]

sis
do you mind sharing some of her medical history here and what exactly seems to be ailing her from your perspective?

 

[sevgi]

sis
do you mind sharing some of her medical history here and what exactly seems to be ailing her from your perspective?

Ok, this is medical so I guess I can share it openly. She has a lump on her bikini line. Like a year or more ago, she made me feel it. Back then, you could only identify it by feeling it. It was about the size of a small grape. Yesterday she showed it to me. It is now protruding and is a lot bigger like the size of a small plum. It is hard-ish.

She's had an ultrasound and a CT scan on the area. It took her a while to man up and get the CT done because my uncle passed away when he was 23due to Iodine poisoning. He was allergic to the stuff and my mum thought she might be allergic too. Anywho...the doctor just said "It may be a sist" and sent her home.

 

[جوري]

Ok, this is medical so I guess I can share it openly. She has a lump on her bikini line. Like a year or more ago, she made me feel it. Back then, you could only identify it by feeling it. It was about the size of a small grape. Yesterday she showed it to me. It is now protruding and is a lot bigger like the size of a small plum. It is hard-ish.

She's had an ultrasound and a CT scan on the area. It took her a while to man up and get the CT done because my uncle passed away when he was 23due to Iodine poisoning. He was allergic to the stuff and my mum thought she might be allergic too. Anywho...the doctor just said "It may be a sist" and sent her home.

hardish wouldn't really make it cystic (cysts are usually bladder like and fluid filled).. sounds like she might have a hernia.. you may read about it here and see if any of this sounds familiar:

https://health.google.com/health/ref/Hernia

either way I'd insist on a diagnosis.. if she had an ultra sound then for sure the results should have been obvious there and then.. you don't need any contrast material for an ultrasound.. what did they say after the US?
did this take place in the united states? I find it odd that someone would be sent home without being told what they have..