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a year of being sick and still no diagnosis

So, One year ago I started having health problems and became too sick to work. After probably 20+ trips to the ER being told they had no idea what was wrong, and 15+ trips to my family dr being told I was nuts I finally got referred to a clinic that diagnosis rare diseases. After seeing me maybe 5 times and running some tests they refer me to a neurologist. The neuro tells me don't worry things look fine. A few more visits and tests later she tells me things don't look good, and I'll probably have a year maybe two to live if I'm lucky. She refers me to a hospital that deals with my condition. The dr there runs more tests over the next 6 months and tells me he thinks nothing is wrong. A few weeks later they tell me over the phone that my diagnosis has changed back to the original one and that I need to come in urgently. I go in then they tell me it hasn't changed. He doesn't even know what tests he's run on me, or what the results have been but thinks its nothing serious. 5 tests from the original dr indicated a serious problem. He ran the same test one time and got different results, so he says the other dr was incompetent. He tells me he has no idea whats wrong but he'll refer me to someone else and I can do this whole dance over again.... Just have to wait another 6 months for an appointment..... Anyone ever had to deal with this nonsense? how do you cut through there bullshit and get results?
 

ZZTops

Active member
Veteran
Hang Tuff Oscar...

You might try a Patient Advocate so you have someone in your corner that knows the ropes......

Hospitals usually have professionals who play this role called Patient Representatives or Patient Advocates. Social workers, nurses and chaplains may also fill this role. These advocates can often be very helpful in cutting through red tape. It is helpful to find out if your hospital has professional advocates available, and how they may be able to help you.

http://www.npsf.org/for-patients-co...s-and-consumers/role-of-the-patient-advocate/

Peace...
 

PetFlora

Well-known member
ICMag Donor
Veteran
What you are learning is if they don't have a pill for it, they are clueless.

I had 4 biopsies done some 30 years apart which revealed nothing. I was put on Prednizone. It took me a year to finally wean myself off of it. Doing so, I lost 30 pounds and was less a miserable fuck. That shit fucks your mind up, as well as your body

The good news is- they don't have a pill for what you have to fuck you up for life.

Now, get proactive and research juicing, liver cleanses, magnesium chloride sol, krill oil, and fasting- and start immediately!

If you have been eating fast foods, and sodas, red bull type drinks- STOP

You are what you eat, but you also might live near power lines or electrical transformers- MOVE
 

Wiggs Dannyboy

Last Laugh Foundation
ICMag Donor
Veteran
I feel for ya oscar. That has to be one of the most frustrating experiences that can happen to a person. In this day and age, it boggles the mind how doctors and the medical community can't figure this stuff out. I'm thinking that one of the problems in these type situations is that the medical community is filled with humans who run the gamut of human personalities, just like in any profession. Some are very effective at their job, others are ineffective, most are somewhere in the middle. To find the answer to your health problem, you need to find one of the doctors who are very effective at their job. Of course, this means that it is a numbers game, and you have to be looked at by a larger number of doctors than is normal for most situations. That definitely sucks, but it's just one of those sucky things in life that has to be dealt with.

I have much sympathy for you dude...because I am one who doesn't handle the numbers game very well. I tend to get frustrated and just say "Fuck It!" But that isn't the right way to respond. What ZZ said is right on, find an advocate who understands the intricacies of the health care system, and they will shorten the time it takes for you to find the right doctor/diagnosis.

Good luck to ya dude.
 

Grass Lands

Member
Veteran
I was feeling piss poor before I started using the nutri bullet....the wife started using fresh cannabis leaves as 50% of the greens, feeling better and better and the energy level is thru the roof...
 
A

AlterEgo860

are u serious? or is this just another hey if i tell people i felt better drinkin weed leaves they can do it and ill laugh type of things? lol . iunno i just recently made my wifey some capsules.. i took 2 ozs of keif.. mixed with 100mls of vegetable oil.. simmered for over an hour at a very low temp just enough to decarb. took capsules filled em up.. n she takes 2-6 a day. 2 at a time.. works for alot of shit.. its basicly like eating edibles without having to eat anything just swallow couple pills and bam.. 45-hour later ur nice and toasted.
 

HidingInTheHaze

Active member
Veteran
Have you ever thought of getting you own health and diet in order?

Clean your up diet, eliminate artificial sweeteners, soda, high fructose corn syrup,food coloring, fried food, limit your vegetable oil intake, eliminate chemical food additives and stop eating anything that is made with GMO ingredients or GMO fruits or vegetables.

Eat more vegetables, fruits, lean meats, drink lots of water, and take your vitamins and fish oil, eat organic food when ever possible after a few months of this you might just find yourself healthy again.

There has been people that have totally turned their health around using this method, it takes dedication but it's better than going to the doctor all the time.


Poor diet will weaken your mind, body and immune system.
I guarantee you if you do this you will feel better than ever and illness will be a thing of the past.

I swear by it and I live by it :)
 

theclearspot

Active member
Err.. are you in the US or in UK? If you are in the UK then I can understand completely what you are going through. I have seen members of my family and friends go through absolute incompetence and neglect on a grand scale on the British NHS. Why? Run by a gigantic civil service with staff that cannot speak English and millionaire consultants who cant bother to speak to patients. Appalling. Sums up Britain.....the working class will continue to suffer.
 

Stoner4Life

Medicinal Advocate
ICMag Donor
Veteran


if I were you I'd marry a big ol' farm gal from Iowa, she's not gonna be able to cure you, hell no, but I can guarantee it'll be the longest two years of your life.......
 
if I were you I'd marry a big ol' farm gal from Iowa, she's not gonna be able to cure you, hell no, but I can guarantee it'll be the longest two years of your life.......

lol I don't even want to know.... My wifes been great through all this. If our roles where reversed I don't think I would be able to handle things as well as her, she has been amazing.
 
Err.. are you in the US or in UK? If you are in the UK then I can understand completely what you are going through. I have seen members of my family and friends go through absolute incompetence and neglect on a grand scale on the British NHS. Why? Run by a gigantic civil service with staff that cannot speak English and millionaire consultants who cant bother to speak to patients. Appalling. Sums up Britain.....the working class will continue to suffer.
I'm in Canada, but it that sounds about correct. unless you show up bleeding or with a broken limb they assume your some kind of hypochondriac crackpot....
 
my diet is good, I just eat fruits, vegetables, grains, no processed stuff, no caffeine, no drinking, no sugary stuff. I have problems swallowing as well so that effects what I can eat. smoking pot helps some. I know nothing about juicing it, or eating it.... never tried either.
 
T

thesloppy

My condolences oscar. I've been dealing with similar stuff, and one of the biggest surprises to me was just how un-urgent non-urgent care can be. Like, most of my previous experience with the health care industry was in situations where I needed care at that moment, a broken bone, a virus, or food poisoning, or whatever, and a doc comes over and hooks you up, or sends you to x-rays/scans, and then off to get a RX or whatever, and it's all done in a matter of hours.

When you're dealing with something considered non-urgent all of a sudden everything slows to a fucking crawl. Oh, you want to see a specialist? Well you're going to need a referral from your primary care guy first. Oh you want a referral? Well we're going to have to give you an exam first. Oh you want to come in for an exam? Leave a message we'll get back to you in a couple days. OK, we seem to have an opening in two weeks, see you then! When you finally get in there, they want to take some x-rays/tests scans before they can send you to the specialist. You have to call the lab to set that shit up, and they'll get back to you in a couple days. OK, they seem to have an opening in two weeks...and those results should get back to your doc a couple weeks after that. Better make another appointment with your doc to look at those test results...lemme guess, they've got an opening two weeks from now? It can be maddening.

My second revelation was that they'll never figure out your issues on their own....you would think that's a crucial part of their practice, but it isn't. In modern (American) medicine you have to tell them what you think is wrong with you, and they will put in a moderate amount of leg work into figuring out whether you are right or wrong. A specialist of some sort might be able to better help you get a diagnosis, but you generally can't get to see a specialist without a referral, and you generally can't get a referral to a specialist without a corresponding diagnosis. You can see the failure of logic in there.

Best wishes getting yo' stuff taken care of oscar.
 

imnotcrazy

There is ALWAYS meaning to my madness ®
Veteran
My Ex has been dealing with this for the last 7 years and it was nightmare-ish and incredibly frustrating while I was with her....

aka it's lupus, no it's MS... let's do a spinal tap... no results etc

My condolences brother, keeping you in my thoughts

:joint:
 

floralheart

Active member
Veteran
And how much did they hit your insurance company for?

This is why medicine shouldn't be a max profit business. They're too busy making money off of you to actually help you.

I rank the medical field with lawyers and news reporters and child molesters.
 

RetroGrow

Active member
Veteran
You haven't mentioned your symptoms, or what the diagnosis was that you were given. Without knowing symptoms, I don't see how anyone here can figure it out or give advice how to cure it. You say that you have problems swallowing. I have that also. It's called Dysphagia. Mine comes from acid reflux burning my esophagus. If you are having throat problems, you should not be smoking. A wide range of diseases can cause swallowing problems, including:

Disturbances of the brain such as those caused by Parkinson's disease, multiple sclerosis, or ALS (amyotrophic lateral sclerosis, or Lou Gehrig's disease).
Oral or pharynx muscle dysfunction such as from a stroke.
Loss of sphincter muscle relaxation (termed "achalasia").
Esophageal narrowing such as from acid reflux or tumors.
http://www.webmd.com/digestive-disorders/swallowing-problems
Any other symptoms?
 
You haven't mentioned your symptoms, or what the diagnosis was that you were given. Without knowing symptoms, I don't see how anyone here can figure it out or give advice how to cure it. You say that you have problems swallowing. I have that also. It's called Dysphagia. Mine comes from acid reflux burning my esophagus. If you are having throat problems, you should not be smoking. A wide range of diseases can cause swallowing problems, including:

Disturbances of the brain such as those caused by Parkinson's disease, multiple sclerosis, or ALS (amyotrophic lateral sclerosis, or Lou Gehrig's disease).
Oral or pharynx muscle dysfunction such as from a stroke.
Loss of sphincter muscle relaxation (termed "achalasia").
Esophageal narrowing such as from acid reflux or tumors.
http://www.webmd.com/digestive-disorders/swallowing-problems
Any other symptoms?
The first neurologist was sure I had ALS, the new one has no idea what's wrong and wants me to see another specialist. I have trouble walking, breathing on and off, swallowing, get insane cramps, twitching and muscle spasms. I really don't think its als as I have seen people with it, and I really haven't declined much if at all over the past year. The odd thing is that sometimes my arms feel fine, then they get this heavy feeling and become difficult to move and uncoordinated. It takes everything I have to move them and if I was to try to touch my nose i'd be lucky to hit my ear. then a few hours or days latter they feel normal again. My legs started off the same way. Also my fingers and toes turn white then blue and sometimes blackish. they get very cold then when they warm up they get bright red and burn like a bastard. I get some tingling at times in the hands and feet and back, and a weird sensation like I have a band of something wrapped tightly around my chest.
 

CosmicGiggle

Well-known member
Moderator
Veteran
You are not alone Oscar, I know someone with a similar condition. Started out with abdominal pain after eating, progressed to trouble breathing and walking and an itchy rash, all within about 1 yr.

Been to lots of specialists and finally referred to a neurologist like you - no diagnosis.

Interestingly enough, his older sister has a similar condition and even the Mayo Clinic hasn't been able to make a diagnosis after 5 yrs. of testing.

The good news is that so far these folks aren't getting worse.:)
 

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