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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 7 of 7. This is the beginning of the thread.
Posted by kilo8 on May 25, 2015, at 16:29:46
I have GAD,depression and OCD.
I had it since childhood. Always being afraid of things and diseases.
Up until age 20 I thought I was healthy. Doctors told me I am healthy and when I felt like something's wrong with me I was treated like a hypochondriac.
But then things started to change. Suddenly I got health issues and symptoms which could not be denied anymore.
This made my fears worse cause then I realized that I'm not healthy after all.
And then at age 28 I got a diagnosis which was totally shocking to me. I wasn't expecting anything like this. Basically I went to a dermatologist cause I noticed my upper body was covered with very subtle skin tags which are flat and look like normal fibromas. I thought this is probably simply fibromas.
But then the dermatologist said that these aren't normal fibromas but very rare fibromas called fibrofolliculomas. And these fibrofolliculomas are linked to a very rare dangerous syndrome calld Birt Hogg Dube syndrome.
I then found out that this syndrome causes these fibromas but also kidney tumors and pneumothorax of the lung.
This diagnosis absolutely shattered me.
It has been many years since the diagnosis and I am still not over it. I simply cannot accept it or get over it. Every time when I look at myself in the mirror and then see all these fibromas I feel absolutely hopeless and miserable.
I dont know how to deal with this. I always think why does this happen to me? Why do I have so many things wrong with me?
I mean how big are the chances of having a very rare genetic syndrome!?
And this syndrome isn't my only health issue. I have many other things which either can't be cured or doctors cannot tell me what it is.I mean all the years before at least I could think maybe I am really a hypochondriac maybe I simply pay too much attention to my body. But after this diagnosis I cannot think this anymore. This diagnosis changed everything.
The dermatologist also told me that I could get a genetic test but he said that the clinical signs are pretty clear and that getting it confirmed would change nothing. It wouldn't have any effects cause you can't cure it anyway.
I really wish there was a chance that these fibromas are something different but I don't think there is a chance because I read the description of the syndrome and looked at pics of people who have it and these fibromas look just like mine and I also have them in exactly the places where people usually get them (face,back,chest).I simply dont know how to deal with this. Since I have GAD and OCD maybe it's impossible. I mean it has been years since I got the diagnosis and I havent been able to deal with it.
Also going to therapists and being told stuff like "you gotta accept it" doesnt help me.
also antidepressants dont help me. I feel really hopeless.
I simply do not have the strength to deal with life and at the same time deal with this feeling of hopelessness which I always get when I am confronted with my health issues.What's also bad is that now where I was told I have a rare genetic syndrome I am now even more worried and think what if this isn't the only rare thing? What if I have other rare things, too? What if other health issues which I have and where doctors dont know what it is are also linked to something rare and they simply dont know it? This makes my fears even worse. :(
Posted by baseball55 on May 26, 2015, at 19:27:56
In reply to How do you deal with having scary genetic diseases, posted by kilo8 on May 25, 2015, at 16:29:46
I'm sorry about your diagnosis, but ask yourself - if I have this very rare condition, what is the likelihood that I also have another very rare condition. It's sort of like -if I get hit by lightning once, what is the likelihood I'll get hit again? Vanishingly remote, probably.
Posted by kilo8 on June 12, 2015, at 20:05:29
In reply to Re: How do you deal with having scary genetic diseases, posted by baseball55 on May 26, 2015, at 19:27:56
The problem is this one condition is already very depressing and makes me feel hopeless and it's also not impossible to have 2 rare conditions. I have seen this in docus on TV. And I also know that I have MANY ailments and no doctor can help me or knows what causes it. :(
Posted by phidippus on July 28, 2015, at 15:54:09
In reply to How do you deal with having scary genetic diseases, posted by kilo8 on May 25, 2015, at 16:29:46
>I simply dont know how to deal with this. Since I have GAD and OCD maybe it's impossible.
I have OCD and diabetes. I hardly think of the latter. I just take my meds and do what I have to take care of myself.
>I mean it has been years since I got the diagnosis and I havent been able to deal with it.
How haven't you been able to deal with it?
>Also going to therapists and being told stuff like "you gotta accept it" doesnt help me.What would you like to be told?
>I have many other things which either can't be cured or doctors cannot tell me what it is.
This sounds a lot like hypochondriasis.
>also antidepressants dont help me.
Have you tried a combination of antidepressant and antipsychotic?
Are you familiar with ACT? https://en.wikipedia.org/wiki/Acceptance_and_commitment_therapy
Eric
Posted by kilo8 on August 7, 2015, at 21:05:57
In reply to Re: How do you deal with having scary genetic diseases » kilo8, posted by phidippus on July 28, 2015, at 15:54:09
No my symptoms aren't all hypochondriasis.
This is too simplistic. I have real issues and doctors don't know what is wrong with me.And with not being able to deal with the genetic syndrome I mean that I am depressed because of it all the time. I have been suffering from this since I found out about it years ago. I wish I had never found out about it. It drags me down all the time. I cannot get over it. :(
Posted by phidippus on August 11, 2015, at 17:29:39
In reply to Re: How do you deal with having scary genetic diseases, posted by kilo8 on August 7, 2015, at 21:05:57
>I have real issues and doctors don't know what is wrong with me
What are these issues?
Eric
Posted by kilo8 on September 9, 2015, at 12:42:29
In reply to Re: How do you deal with having scary genetic diseases » kilo8, posted by phidippus on August 11, 2015, at 17:29:39
All kinds of things. Over the years more and more health problems started coming up. I have joint pains and can't do any more sports. My knee has been hurting for almost 1 year and I don't know why. I got a MRI which was normal, I went to rheumatologists and they found nothing. It simply sucks when doctors cant help you.
I also have visual disorders. I have visual snow and also see white blood cells in the eyes which I didn't have when I was younger. Doctors simply say it's harmless or don't know what causes it.
Then I also have lipomas. They also sucks and drag me down.
And then there's also the genetic syndrome which I found out about years ago. This has made me feel even more depressed and hopeless. I mean all those years I was treated like a hypochondriac. Doctors told me I am healthy and then out of the blue I get such a diagnosis and am told that I have a rare genetic syndrome. Can you imagine what this felt like?
I just don't understand how can 1 person have so many different diseases at once? It just makes no sense. Other people in my age are healthy and have no issues at all and I have so many things. I cant deal with this.
This is the end of the thread.
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