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Old 07-16-2004, 06:49 PM   #1
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Unhappy Help I'm gonna die! (prolactinoma)

In january of 1998, I started having tinnituses, but minor, and I could handle them. Then, in may of the same year, I started having problems with my eyes: lost, and lost of weirdo problems. My sight became filled with moquito noise, I became sensible to almost everything under the sun like flickering, patterns, sun light, lights in general, you name it. But somehow I still managed to live a somewhat normal life and live through the pain. We made tests and nothing was found that was abnormal. In august of 2003, I begin to have EXTREME problems with my eyes and especially my ears, to the point that to this day I live isolated in my room alone. I haven't went outside to take a walk for nearly one year for christ's sake! In october of 2003 I was hospitalized, and a scan was made. Then we discovered that I had a prolactinoma, which was touching my hypophysis, both my optical nerves (especially my left one), and the point where they get together (I dunno the exact terms).

In november of that year I started taking Parlodel, but my sights continued to degrade. So in december we went with Dostinex, with yet no results. All while this, my senses got worser and worser to the point of me wanting sometimes tu burst my eyes and to hammer my head against the wall to make the pain go away. I also thinked of suicides on nearly a daily basis.

At first my prolactinoma rate was 2300 ngs, but now with Dostinex it's been stabilized to 69, which seems to be quite reassuring. We have made all kind of medical tests possible, and everything else is normal, everything (we tried all of that you can think of, even spiritual ones). But my senses continue to worsen! I can't bear the pain, and being stuck up in my room all alone with just being able to read a little bit and use a little bit my computer!

Since one year, I cannot watch tv, listen to any music, or I cannot bear nearly all noises except conversations. If I am exposed to one of those said noises, my ears will start to become affected with extreme pain, high pressure and tons of really scary stuff. There's always some pain, my symptoms are always there, and they keep getting worse daily, with never one moment to rest!

I can't tell if there is an amelioration with my senses, probably not. But my eyes, ears, throat, nose, larynx, head, mental condition, teeths, mouth, you name it, everything is fine except for that. So my symptoms and pain cannot come from anything else right? But I have been going under this for 6 [removed] and a half years! These days there's just so much pain, so much trouble, so much misery, so much loneliness, that I've decided to end my days if I do not find a solution, or a tangible information that I will be cured someday on a VERY short term. We'vew seen every specialist under the sun, and no one has ever seen [removed] like that before (most of them only talk about the loss of field of vision). They all play ping-pong and contradict each another. They all have their own truth, and no one knows what is going on. But there's always only ONE [removed]TRUTH!

What is gonna happen to me? Are these symptoms really due to the prolactinoma I just described? What am I going to do to make my life painfree and normal? I had to trow away all my childhood dreams because of this [removed]TUMOR! I can'T do jack [removed] and I'm suffering to the max!

Will Dostinex cure me? THe tumor seems to have begun to slightly dissolve. Will I get my senses and my life back? And most important of all: has anyone of you heard of such symptoms due to a prolactinoma?

My guess is that my vision's signal is poorer due to the pressure on the eyes, thus making my eyes force more and making me more sensible to all things that I see. As for my ears, I supposed that the pressure on my hypophysis is giving me troubles with my body balance, thus causing the tinnituses and hearing sensibilities. I have no earing loss at all. Or maybe am I beoing subjected to the Dostinex's side effects? My ears seems to be a lot more worse since I began to take these kinda pills.

Please, god, please, plesae look in your heart and hook me up. This is my last [removed]resort. If nothing comes out of this thread, as the pain has became unbeareable, I'm gonna shoot myself through my moot and make my brain explode, and I'm being serious here. Or some [removed] like that. Please, in the name of everything that is holy, HELP ME KNOW WHAT'S GOING ON WITH MY LIFE AND GET MY LIFE BACK! You are my very very last resort. I WANT MY LIFE BACK [removed]!



I am anxiously awaiting feedback.

I want to live more then anything. Please help me stay alive.

Last edited by Moderator BAC; 07-19-2004 at 07:05 AM. Reason: Do not use obscene words! If a word has to be asterisked it not appropriate for these boards!

 
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Old 07-16-2004, 07:47 PM   #2
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Fruit Loop HB User
Re: Help I'm gonna die! (prolactinoma)

I'm sorry I don't know anything about your problem, but please don't do anything drastic. Hopefully someone will post with some thoughts.
But in the meantime, please keep yourself safe.

Last edited by Fruit Loop; 07-16-2004 at 08:06 PM.

 
Old 07-16-2004, 08:01 PM   #3
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Re: Help I'm gonna die! (prolactinoma)

Mmmkay...

Last edited by Peralph; 07-16-2004 at 08:02 PM.

 
Old 07-16-2004, 08:39 PM   #4
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leaf_20 HB User
Re: Help I'm gonna die! (prolactinoma)

Hi

Like stated above, please dont do anything drastic. I personally really care about your issue and that is why I'm responding. You are not in this alone.

You should continue to work with your doctor on medication to lower your levels.

how about surgery is that an option for you, or is the tumor too close?

If its really really bad, that may be an option.

Check with your doctor.

 
Old 07-16-2004, 08:43 PM   #5
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Re: Help I'm gonna die! (prolactinoma)

oh, and to add, your symptoms are exactly what a person with prlactinoma. That is all normal...and YES, your eyes can improve if those levels decrease.

Read up on some of these sites with great info..the more you know, the easier it is to fight and deal with:

http://www.niddk.nih.gov/health/endo/pubs/prolact/prolact.htm

 
Old 07-16-2004, 09:12 PM   #6
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Re: Help I'm gonna die! (prolactinoma)

Thank you Leaf_20...

Oh that info... it must well be spawned over a few thousand websites... I dunno how many times I saw it when searching on google to find as much different information as possible...

I met the greatest specialist in endocrynology in all of Canada specialized in prolactinomas, Dr. Omar Serri from Notre-Dame hospital (in Montreal), and he said he has never in his whole career seen those symptoms, nor has got any info on previous similar cases. So how can you say that those symptoms are normal? Everyone said that the only eye problem that occurs if the loss of the field of vision. As for ears problems, no one ever saw anything related to that.

Like I said, I tought my ears problems were due to the pressure on the hypophysys, but a doctor told me that the balance was all dealt by the cerebellum and that hypophysys had nothing to do with it. Could the hypophysis really mess up with my earing like people with Meniere? I think I am really sensible with my senses and has always been, so maybe I am noticing things that other people won't notice unteil they're well into their forties. I asked to my endocrynologist and she said the yougest patient she ever had (male) was 38 and I am 22, and she has seen hundreds.

That is all great and plausible theory, but I have found no previous similar cases anywhere on the intarweb. The problem is, when you face such problems, you've got to have something firm, something as tangible, as solid as the floor currently is for my right foot, to fight when everyday, there are dozens of time swhen you wanna kill yourself because of the pain you have to cope with.

Right now my life is a big junction, and I have three choices: to kill myself now, to wait again a little bit (like I've done a couple hundred times), or to decide to cope with all the pain no matter what, which I know I cannot do forever for I have no such strenght. If I only fcould, I would take the path I'm in and go back as far in the back as I could, to start taking Dostinex 10 years ago, so I won't have to endure such pains, such dreams all swept away by iced cold reality.

In the end, maybe you don't have to worry too much. I am kinda "grand parleur, petit faiseur" if you know what I mean. But everything I've said is real. And I feel I cannot stain all that [removed] for very long even if I decide to rise again like a boxer. So if there's only a slight thing that you can do that would help me or give me that tangible knowledge for a cure that I'm looking for, then I beg you to do it. Maybe that would be the best thing you'd do in your whole life.

Thanks everyone

I hope I'm gonna live my dreams

Last edited by Moderator BAC; 07-19-2004 at 07:07 AM. Reason: Do not use obscene words! If a word has to be asterisked it not appropriate for these boards!

 
Old 07-16-2004, 09:17 PM   #7
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Re: Help I'm gonna die! (prolactinoma)

Oh I forgot, for the surgery, Dr. Serri said that it wasn't an option because it always gave very disappointing results, always less effective then medication (parlodel and Dostinex, the only two pills that exist for this kind of [removed]), and it had a [removed] of consequences. My tumor is slightly below an inch in scope.A neurochirugian told me that it would be a relatively safe job, but no one wants to do it, everyone wants me to take those pills forever. And this is Quebec, you know, so for me it is not possible for me to get a private surgery by paying, so I have to cope with what the healthcare system offers me.

Last edited by Moderator BAC; 07-19-2004 at 07:08 AM. Reason: Do not use obscene words! If a word has to be asterisked it not appropriate for these boards!

 
Old 07-16-2004, 09:20 PM   #8
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Re: Help I'm gonna die! (prolactinoma)

And I don't give a flying [removed] about having a tumor... all I care about is to fully recover my senses and get my life back. All those prolactinoma rates are nothing more then a number on a sheet of paper to me. Call me Thomas all you want, but after all those years, I want to feel the difference with my senses, or to know some real jurisprudence, or else I'm not gonna believe anything.

Last edited by Moderator BAC; 07-19-2004 at 07:09 AM. Reason: Do not use obscene words! If a word has to be asterisked it not appropriate for these boards!

 
Old 07-16-2004, 09:43 PM   #9
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leaf_20 HB User
Re: Help I'm gonna die! (prolactinoma)

Quote:
Originally Posted by Peralph
Thank you Leaf_20...

Oh that info... it must well be spawned over a few thousand websites... I dunno how many times I saw it when searching on google to find as much different information as possible...

I met the greatest specialist in endocrynology in all of Canada specialized in prolactinomas, Dr. Omar Serri from Notre-Dame hospital (in Montreal), and he said he has never in his whole career seen those symptoms, nor has got any info on previous similar cases. So how can you say that those symptoms are normal? Everyone said that the only eye problem that occurs if the loss of the field of vision. As for ears problems, no one ever saw anything related to that.

Like I said, I tought my ears problems were due to the pressure on the hypophysys, but a doctor told me that the balance was all dealt by the cerebellum and that hypophysys had nothing to do with it. Could the hypophysis really mess up with my earing like people with Meniere? I think I am really sensible with my senses and has always been, so maybe I am noticing things that other people won't notice unteil they're well into their forties. I asked to my endocrynologist and she said the yougest patient she ever had (male) was 38 and I am 22, and she has seen hundreds.

That is all great and plausible theory, but I have found no previous similar cases anywhere on the intarweb. The problem is, when you face such problems, you've got to have something firm, something as tangible, as solid as the floor currently is for my right foot, to fight when everyday, there are dozens of time swhen you wanna kill yourself because of the pain you have to cope with.

Right now my life is a big junction, and I have three choices: to kill myself now, to wait again a little bit (like I've done a couple hundred times), or to decide to cope with all the pain no matter what, which I know I cannot do forever for I have no such strenght. If I only fcould, I would take the path I'm in and go back as far in the back as I could, to start taking Dostinex 10 years ago, so I won't have to endure such pains, such dreams all swept away by iced cold reality.

In the end, maybe you don't have to worry too much. I am kinda "grand parleur, petit faiseur" if you know what I mean. But everything I've said is real. And I feel I cannot stain all that **** for very long even if I decide to rise again like a boxer. So if there's only a slight thing that you can do that would help me or give me that tangible knowledge for a cure that I'm looking for, then I beg you to do it. Maybe that would be the best thing you'd do in your whole life.

Thanks everyone

I hope I'm gonna live my dreams

I'm no doctor, but if you have a tumor near your eye, its going to effect your vision if it gets bigger, and anything close to your eyes.

Just some general info:

Quote:
In men, prolactinomas can cause impotence. Large prolactinomas may cause vision disturbances by pressing on the nearby optic nerve.
Quote:
Some 80 to 90 percent of prolactinomas can be treated using medication alone
Quote:
Surgery is sometimes used to reduce tumor size in patients with large prolactinomas, especially if the tumor is causing vision loss
Diagnosing:

Quote:
If your doctor suspects a prolactinoma, a blood test may be ordered to measure your prolactin levels. MRI may also be used to visualize the tumor.
I dont know what the issue could be relating to the ear, but fairly sure it has to do with the tumor.

I am pretty connected to the other side and I feel that I usually make the right conclusions in these things..I think it is DEFINETLY connected.
Once something effects your head, you are going to have a lot of issues.

I am not a doctor, so I dont know if there are any new medications out there that are good. I can try to help you though get stronger psychologically, so you can do the necessary things medically and feel strong going through this. BECAUSE, you do have options, you do have things to keep things under control, there are always new things coming out.

I take psychology in University, 2nd year next year..so if you need me to help you, I will..even without it I've helped quiet a few people, I've just studied a lot there. And also I do connect well with people and I have done some psychic readings for people and people have found it was accurate and it was helpful..for some, that helps too.

You are not alone though and you know, when someone tells me there is stuff that you want to do, that tells me, you are not going anywhere, you have too much to do here to kill yourself or anything stupid like that.

I think though if psychologcially you can get a good attitude the rest will be a piece of cake.

[removed]

Last edited by Moderator BAC; 07-19-2004 at 06:57 AM. Reason: Do not ask for contact information. Please read and follow our rules. Thank you!

 
Old 07-16-2004, 09:50 PM   #10
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Re: Help I'm gonna die! (prolactinoma)

About my levels I tought I mentioned it in my thread. The level started at 2300 ng when the first blood test was conducted, and it is now 69 ng but I have yet to feel a difference with my senses.

I'm in Quebec, and no doctor wants me to get surgered, and since it is a public complete healthcare system I cannot pay for it even if I had the money and wanted to. They want me to wait and wait and wait and wait for litteraly years with me taking Dostinex. But the problem is that I have a life to live in that timeframe!
[removed]

Last edited by Moderator BAC; 07-19-2004 at 06:58 AM.

 
Old 07-17-2004, 12:15 AM   #11
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Re: Help I'm gonna die! (prolactinoma)

[removed]

As far as what you are going thru, I know what pain and loss of senses or hypersensitivity can do to a person physically, mentally, and spiritually. I am recovering from a rare neurological disorder called Guillian Barre Syndrome. In Nov 2002 my own body attacked itself and distroyed my peripheral nervous system. I layed paralysed in ICU from the neck down on a ventilator. It has taken me until now to learn how to do EVERYTHING all over again and I mean EVERYTHING. I have endured pain from the top of my head to the tip of my toes. Some days the pain was so bad that I would actually pass out from it.

I stared a bottle of whiskey and enough narcotics to kill an elephant down. Physically and Mentally I was ready to be released from this hell I was living in. Spiritually I couldn't do it. I faced the beast and won. I now live pain free most of the days. The days that do have pain I somehow find a way to make it thru.

I understand your thoughts, I also understand that when you consider the thought of suicide life just doesn't seem THAT bad. You have found a way to controll the situation. You now have a realistic way out that no one else can provide. The problem with this is if you think like this for to long it will eventually lead to it. How unfortunate for everyone else who has to live in the path that you chose for them to go down.

I hope you find peace. I hope you find a way to be pain free. I hope you get your life back. I hope you don't think suicide is a way to accomplish all of these things.


Angela
__________________
A question in never stupid if you don't know the answer.

Last edited by Moderator BAC; 07-19-2004 at 07:11 AM. Reason: Do not instruct others on off board searches. Thank you!

 
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