Three years and no diagnosis. Frustrated

[andre79]

I apologize for the title of the post, but this is how I really feel. I am exhausted of going from doctor to doctor (around 40 in three years) and I have not received a diagnosis, except for fibromyalgia and psychiatric issues, despite the fact that I had never presented in my life any psychiatric problem and I don't carry them in my family genetics. Anyway, I don't want to test anymore... I am about to give up... my symptoms get worse everyday and doctors are refusing to treat me because they are clueless about my case.

I have done a table with my suspicions and the test evidence I have. Please look at it and tell me what you think... I can`t even think anymore. The problem is that if I take this table to my doctors they will send me right away with the shrink because "only an obssesed person would do a chart about their health" This is the kind of responses I get from them, so frustrating.

What should I do now? Please help...

 

[Misfit Toy]

Do you live in United States or in the UK? You have a diagnosis of fibromyalgia and yet you have no pain?

I would say that you don't have the illnesses above or at least not lupus. If it's coming back negative more than likely you don't have it. I understand your need for doing research and wanting to figure this out on your own since no one else is wanting to.

When you say you were dying, what exactly do you mean? Are your symptoms like chronic fatigue syndrome, or what are they?

 

[deleder2k]

what about IVIG?

 

[WillowJ]

Usually it's best not to suggest a diagnosis to your doctor (unless it's something you are reasonably sure you have), although it usually doesn't upset them to ask for a test to check for for something.

I've had some docs appreciate charts of symptoms and others see it as a sign of obsessiveness or complain about "too many symptoms" (thus, obviously not a conventional disease to their mind).

Your labs I would just list for them, if they are not in your medical records (or you think they have not read them recently).

I do understand getting worse and not having doctors who can do anything. I'm sorry. This is awful. All the best.

 

[Ecoclimber]

See my PM.

 

[5150]

ANDRE, your message is hard for me to read, as I'm in the same boat. Probably most of us are, since the cost to see the "doctors in the know" is out of reach for the vast majority of us.
Treat the symptoms as they appear. Otherwise they build up and overpower you.

 

[andre79]

Do you live in United States or in the UK? You have a diagnosis of fibromyalgia and yet you have no pain?

I would say that you don't have the illnesses above or at least not lupus. If it's coming back negative more than likely you don't have it. I understand your need for doing research and wanting to figure this out on your own since no one else is wanting to.

When you say you were dying, what exactly do you mean? Are your symptoms like chronic fatigue syndrome, or what are they?

Misfit, I am currently located in South America and I have trouble travelling abroad to get help because a particular situation in my country. When I started with this illness I had pain all over my body, the doctor diagnosed me with fibro, prescribed Cymbalta and it took it for more than two years. Cymbalta did nothing to relief my pain, but the funny thing is that after I quit cymbalta the pain was gone. I don't have an explanation for it.

I am not implying that I have all those illnesses, but only one or two, who knows, I just want to know which one i have to get a proper treatment. When I say I was dying is because I spend most of my time in bed, exhausted of doing nothing, what quality of life is that? and to add insult to injury, I have to bear doctors disbelieving me, and treating me like a psychiatric patient. The hepatologist had the nerve to tell me last week, that my symptoms are because I am depressed that I am 36 years old and single. So, what's the point? I ask...

My symptoms are so varied and they come and go... fatigue, paresthesias, multiple chemical sensitivities, night sweats, tachycardia, dermatitis, itchiness, dilated pupils, dizziness, dry skin, hair loss, fasciculations, joint pain, brain fog, anyway, so many that I forget...

 

[SDSue]

I apologize for the title of the post, but this is how I really feel. I am exhausted of going from doctor to doctor (around 40 in three years) and I have not received a diagnosis, except for fibromyalgia and psychiatric issues, despite the fact that I had never presented in my life any psychiatric problem and I don't carry them in my family genetics. Anyway, I don't want to test anymore... I am about to give up... my symptoms get worse everyday and doctors are refusing to treat me because they are clueless about my case.

Don't give up yet, Andre! Not yet. Not when there is so much meaningful research in the pipeline.

I, too, go thru phases where I am sick to death of doctors, medicines, etc. So I lay low for a while, regroup, and get back to finding answers. It's OK to be tired of it all for a while, it's just not OK to give up.

 

[andre79]

what about IVIG?

Hi Deleker, I would consider it if it wasn't so expensive and it is kind a blood tranfusion from 1000 persons, isn`t it? I would be very afraid of it, a new infection is the least I need now... correct me if i am wrong please...

 

[andre79]

Usually it's best not to suggest a diagnosis to your doctor (unless it's something you are reasonably sure you have), although it usually doesn't upset them to ask for a test to check for for something.

I've had some docs appreciate charts of symptoms and others see it as a sign of obsessiveness or complain about "too many symptoms" (thus, obviously not a conventional disease to their mind).

Your labs I would just list for them, if they are not in your medical records (or you think they have not read them recently).

I do understand getting worse and not having doctors who can do anything. I'm sorry. This is awful. All the best.

I understand that suggestion a diagnosis to a doctor may not be an intelligent move, but Willow, I have been in 40 doctors in three years! 40! And no one of them have a clue about my case. What else should i do? I have to research by myself, or let myself die... Most of the doctors i have visited are the TOP (I can't imagine how the lower end are) and they are so arrogant... I don't know what else to do...

 

[andre79]

ANDRE, your message is hard for me to read, as I'm in the same boat. Probably most of us are, since the cost to see the "doctors in the know" is out of reach for the vast majority of us.
Treat the symptoms as they appear. Otherwise they build up and overpower you.

Thank you 5150, I know, actually I felt so bad today and I knew that the only place I could find some comprehension and sympathy it would be here.

 

[andre79]

Don't give up yet, Andre! Not yet. Not when there is so much meaningful research in the pipeline.

I, too, go thru phases where I am sick to death of doctors, medicines, etc. So I lay low for a while, regroup, and get back to finding answers. It's OK to be tired of it all for a while, it's just not OK to give up.

Thank you SDSue, I know... it's been three years already without answers and I had a bad day, and i had to vent...

I will probably not give up, but today... i allowed myself a hating doctor day...

 

[minkeygirl]

I understand you're having a bad day but please read this before you use words like you are dying.

http://forums.phoenixrising.me/index.php?threads/two-suicides-in-two-months.36128/

 

[WillowJ]

I understand that suggestion a diagnosis to a doctor may not be an intelligent move, but Willow, I have been in 40 doctors in three years! 40! And no one of them have a clue about my case. What else should i do? I have to research by myself, or let myself die... Most of the doctors i have visited are the TOP (I can't imagine how the lower end are) and they are so arrogant... I don't know what else to do...

Top doctors are often arrogant, yes. I finally found nice doctors in a city clinic. But it took me more than 10 years to find them (I was not as sick the whole time, as I am now and as you sound now).

It's just that low C3 could mean a lot of things. Protein in urine can also mean a lot of things (is this all the time??). But you could push your doc to talk about the results with you--and important symptoms, like the syncope and POTS stuff. And I do think patients may have a sense about what's going wrong, although we don't often know as much about what the potential diseases are.

But I shouldn't be telling you what to do.

It's difficult being sick with no medical help. I'm sorry, and I hope things get better. I wish I were able to make them better.

 

[Misfit Toy]

Perhaps he does feel like he's dying....only he knows. No discounting that.

IVIG is not easy to get. You can't just get it.

Being in South America is very difficult. Not so many docs down there who treat this or who are in the know.

I so understand these symptoms that come and go all within a matter of hours or days. It's completely mind-boggling to me. This past week for me has been absolutely insane. I have more symptoms than I know what to do and they just come and go and they're making me feel nuts.

I'm truly sorry. I understand and wish I could help.

 

[minkeygirl]

He clearly said he was being overly dramatic because of frustration about doctors and was having a bad day.

In light of the recents suicides I don't think its too much to ask someone to be more aware of how words can be powerful and painful for others.

 

[andre79]

Minkeygirl,

I changed the title of the post out of respect and I apologize if I offended anyone. But really, you have no way to know how I am feeling and if I might act upon it. I am not here to be judged as overdramatic. As I offer respect and many times support to others, I ask to be respected as well. No hard feelings, though. Thank you.

 

[Kati]

Hi @andre79 as a whole, our whole community is receiving very little treatments, care and respect. This illness is stigmatized and has bee vilified by the british psychiatrists.

i have not been successful in getting competent health care in my own country (Canada). Many have received horrible diagnosis and suffered from the bias from doctors. It happens in the best of health care systems.

We could talk about this forever, but things would not change much. Things start changing when patients unite, when discussions happen between the health care system and the patients, particularily when good science emerge. That is a great opportunity to tell governments and doctors that they have been leaving groups pf patients behind.

I can't obviously diagnose you, or tell you that you got what I got. I certainly understand how hard it gets when we're sick day, after day, after day.

May I suggest contacting local or national patient organizations asking for assistance in physicians focusing on similar type of diseases?
Of course reaching out online is a very good thing. kno you are not alone.

 

[SOC]

@andre79,

I find that when I have to work with doctors who don't understand my illness, it is best to ask for help with one or two related symptoms from a doctor who treats those symptoms. In other words, seek symptomatic treatment rather than an overall diagnosis, which you are clearly not going to get.

For example, if you believe you have dysautonomia, find the best doctor you can who specializes in that and only tell him or her about the related symptoms. If you can get an improvement in your condition with those treatments, you can move on to something else with another doctor.

As you have already experienced, many doctors are taught that a patient presenting with multiple symptoms in multiple body systems is a hypochondriac. It's not necessarily true, but that doesn't help if you have to work with those doctors. Only give them a little bit at a time. That they can deal with.

Remember, this is a problem with the doctors, not you. They are the ignorant ones. As unfair as it is, your job is to make their jobs as easy a possible.

Hang in there. We all understand. Many of us have been there.

 

[Misfit Toy]

Andre, I don't think you said anything wrong. The reality is, many of us have felt like we are dying at times. It's not being overly dramatic. That's a reality many of us face. Recent suicides or not, you should be allowed to voice that as we need to support you and tell you, we care, we respect you and we are here for you.

Many of us feel awful. I've spent 3 days in bed, migraine, so weak and exhausted. Sometimes with this illness and recent crash....I question if I'm dying. I don't want to die or end my life, but why can't I get up? Why am I plagued with so many ailments? A thought of many of us. I don't know what doctor to see anymore, if any. They only confuse me more.

If that is a problem to say on this site...then I need to leave it.

CFS/ME is known to make one feel like they have AIDS, before AIDS had treatments that actually worked. There are books written about CFIDS that say, "CFS makes you feel like you are dying." This illness is no joke. Some are on constant bed rest, some...a few, having feeding tubes, etc. Clearly, that's not everyone.

I don't know what you have but Godspeed, may you find out my friend.