Discussions By Condition: I cannot get a diagnosis.

22 yrs old - Tons of med bills - Lots of problems - NO ANSWERS!!!!!

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: James3299
  • January 17, 2008
  • 05:06 AM

:(
Hello thanks for taking the time to view my post... I am a 22 yr old guy with lots of health problems. I first will explain my history(undiagnosed for the most part) and then my current sickness (undiagnosed) . I really need your help so please take a min or two and read my post. Thanks!

About my history,
I have had problems with my eyes, horrible GERD, chest pain, collapsed lung, joint pain, eye floaters,dark spots,flashes,halos ,double vision,watery eyes, some headaches , spine problems (mild scoliosis) and various other things since age 16 or 17. I am skilly tall and lankey with long fingers ect. I even have strech marks from being tall on my back. I was tested for marfans at a national center and they said no I didnt have it because my heart was uneffected at that time. Since then my normal doc says I DO Have marfans but it still hasnt affected my heart greatly (that I know of). I have often been to the ER over the years since then with bad chest pain mainly in the center of my chest. I also have been there for horrible headaches once or twice only. They just do CT scans and say its all normal then send me home with the same pain.... Really the only thing docs have found is my mild scoliosis, GERD real bad, increased pressure in spine, mild hiatal hernia, stenosis (narrowing of the area your nerves in your spine go thru) and migraines rarely. Beyond that its a mystery..... I get sick atleast once a month sometimes once every week, usually it lasts 2-4 days each time. Generally I dont have much evergy and never feel good. No explinations .... All the MRI ,ct scans, blood work I have gotten for the most part were negative .

Things that have been bothering me over time: around a month: lumps under the skin in my neck which are NOW painful, when I breath pain shooting up the same painful area on left side of my neck (deep breaths) like a feeling when your arm wakes up... tons of chest pain, gerd, constipation, some pee problems (they said I had prostitus years ago but the mild pain has never really gone away) .... recently prob within the last few weeks my eyes has been FLASHING - meaning any dark/black areas of what I am looking at including my whole visiion when I close my eyes flash WHITE BLACK WHITE BLACK WHITE BLACK really fast then stop... at random times. Its really odd and freaking me out.... Anyway...

About my current sickness,
I sit here now feeling like crap, really.
I have been sick with something for nearly 4 days now.
I will just go ahead and explain exactly how it stated from the first day until now. I would just ignore it and put it off like my GERD which usualyl would go away but this is persisting and has wierd pains and intense ones..
I was fine for a couple weeks with no major problems. I was sitting on the comp in the evening (I had been on the comp most of the day with no problems) and out of the blue I developed a severe lower left rib/lung area chest pain. It was sharp and in that one spot PINGING with pain every 1-2 seconds. It felt like when my lung collapsed when I was 18 (I was just sitting on the comp doing nothing too...) This went on for about 15 mins strait and I was getting worried. It finally settled down a bit and that turned into chest pain in the center of my chest /all over mychest along with vomiting all night which did not help anything. The chest pain seemed to be all over my chest, when I would breath it would hurt (in center AND on side at different times). I tryed to sleep but was up almost all night till around 8am with horrible ripping pains in my chest. I finally feel asleep around 8 and woke up with bad pain around ... 2pm.

The 2nd day I had trouble breathing my chest felt *tight* and it was still quite painful. The initial *lower left rib/lung* pain that stated it all went away to very mild but a bad pain developed in the same area but on the back side of my lung left of my spine- which would hurt bad if I moved wrong ect. Anyway, the chest pain was horrible the 2nd day also- Note that I kept getting ACID taste in the back of my mouth- you may think its just gerd but gerd only gives pain in the center of the chest- this pain is upon movement in the side and random pains in the side parts of my chest. The vomiting was only on the 1st night. From that day until today the chest pain is still there and I have been in bed every day sleeping long hours with no pain relief- along with that one spot left of my spine that hurts. The chest pain seems to be random and I currently have a feeling of *inflamed* discomfort in my chest..and pain in my top left chest area near the arm pit.... breathing sometimes causes a pain in one of the *usual* areas in my chest. My usual areas I get chest pain are - > Top left, all over the center areas, just below the center part, top right.
I noticed breathing also sometimes made that one spot left of my spine in the back hurt. IT almost feels like my chest is squeezed. I am sure if it was a heart attack I would probably be dead by now.. its been 3-4 days.

Today it really has made me feel ill overall for some reason- like its gotten worse. Not only is it chest pain- no acid anymore btw- but i just feel ILL and only want to lay in bed. Its hard to describe how I feel... Something with my head where I just want to lay down to feel better. Being up and about (like I am now) just makes me feel worse OVERALL... my chest pain gets WORSE when I move around and betteer upon laying down. Same goes for the ILL feeling overall, better when laying down.

One last thing I noticed today is my eyelids are very red and my lower part of my actual eye is bloodshot and red. Not sure what that means....

I have been popping IBROPHEN like crazy with not much relief. I am about to just go to the ER to see if they can find anything.....

Note I went to my docs yesterday and he pretty much had no answers and just gave me the IBPROPHEN. He said I may have some nerve disorder which is causing all the pain.. and named a few possible things... (how could that just happen out of the blue?) ..... forget what exactly but he didnt plan on testing me for anything.... just sent me home with no answers.


Well can anyone relate? .......

Another quick thing about my eyes, they have been getting progressivly worse since age 16 and that was one of the first things to go bad.... started with a few floaters no flashes or dark spots, to seeing *ant* like things which look liek floaters but only appear in sunny areas - like when the TV is on a channel that doesnt exsist looks likes ants- to getting dark spots when I look around in corners, flashes, halos around lights and more recently blurryness at ranges and night, double vision type stuff when looking at led lights, white flashes when looking at anything dark.

Right now my chest hurts really bad from getting out of bed and trying to fnish this post..... will let you know how it turns out because this is messed up.

Thanks,
James

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4 Replies:

  • The flashing lights could be aura migraines. I hope you have been to a good eye dr, Neuro and had some type of brain scan to rule out things like Ms.Are you on any meds?? Could be reactions or side effects.What kind of stretch marks?? Small and faint or are they large and red?? Do they come and go, or they there all the time? Have you ever been tested for bartonella aka cat scratch fever? Or for Mycroplasma bugs,Momo, Copd, CPN, babesia infection,or Lyme disease?? These will affect the Lymph glands.Do some researching on what I have mentioned. Check out lymenet.org, they have lots of info on many things. Hope you get it sorted, so you can get feeling better.~~Dee
    Anonymous 42789 Replies
    • January 20, 2008
    • 00:35 PM
    • 0
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  • :(Hello thanks for taking the time to view my post... I am a 22 yr old guy with lots of health problems. I first will explain my history(undiagnosed for the most part) and then my current sickness (undiagnosed) . I really need your help so please take a min or two and read my post. Thanks! About my history,I have had problems with my eyes, horrible GERD, chest pain, collapsed lung, joint pain, eye floaters,dark spots,flashes,halos ,double vision,watery eyes, some headaches , spine problems (mild scoliosis) and various other things since age 16 or 17. I am skilly tall and lankey with long fingers ect. I even have strech marks from being tall on my back. I was tested for marfans at a national center and they said no I didnt have it because my heart was uneffected at that time. Since then my normal doc says I DO Have marfans but it still hasnt affected my heart greatly (that I know of). I have often been to the ER over the years since then with bad chest pain mainly in the center of my chest. I also have been there for horrible headaches once or twice only. They just do CT scans and say its all normal then send me home with the same pain.... Really the only thing docs have found is my mild scoliosis, GERD real bad, increased pressure in spine, mild hiatal hernia, stenosis (narrowing of the area your nerves in your spine go thru) and migraines rarely. Beyond that its a mystery..... I get sick atleast once a month sometimes once every week, usually it lasts 2-4 days each time. Generally I dont have much evergy and never feel good. No explinations .... All the MRI ,ct scans, blood work I have gotten for the most part were negative . Things that have been bothering me over time: around a month: lumps under the skin in my neck which are NOW painful, when I breath pain shooting up the same painful area on left side of my neck (deep breaths) like a feeling when your arm wakes up... tons of chest pain, gerd, constipation, some pee problems (they said I had prostitus years ago but the mild pain has never really gone away) .... recently prob within the last few weeks my eyes has been FLASHING - meaning any dark/black areas of what I am looking at including my whole visiion when I close my eyes flash WHITE BLACK WHITE BLACK WHITE BLACK really fast then stop... at random times. Its really odd and freaking me out.... Anyway... About my current sickness,I sit here now feeling like crap, really. I have been sick with something for nearly 4 days now.I will just go ahead and explain exactly how it stated from the first day until now. I would just ignore it and put it off like my GERD which usualyl would go away but this is persisting and has wierd pains and intense ones..I was fine for a couple weeks with no major problems. I was sitting on the comp in the evening (I had been on the comp most of the day with no problems) and out of the blue I developed a severe lower left rib/lung area chest pain. It was sharp and in that one spot PINGING with pain every 1-2 seconds. It felt like when my lung collapsed when I was 18 (I was just sitting on the comp doing nothing too...) This went on for about 15 mins strait and I was getting worried. It finally settled down a bit and that turned into chest pain in the center of my chest /all over mychest along with vomiting all night which did not help anything. The chest pain seemed to be all over my chest, when I would breath it would hurt (in center AND on side at different times). I tryed to sleep but was up almost all night till around 8am with horrible ripping pains in my chest. I finally feel asleep around 8 and woke up with bad pain around ... 2pm. The 2nd day I had trouble breathing my chest felt *tight* and it was still quite painful. The initial *lower left rib/lung* pain that stated it all went away to very mild but a bad pain developed in the same area but on the back side of my lung left of my spine- which would hurt bad if I moved wrong ect. Anyway, the chest pain was horrible the 2nd day also- Note that I kept getting ACID taste in the back of my mouth- you may think its just gerd but gerd only gives pain in the center of the chest- this pain is upon movement in the side and random pains in the side parts of my chest. The vomiting was only on the 1st night. From that day until today the chest pain is still there and I have been in bed every day sleeping long hours with no pain relief- along with that one spot left of my spine that hurts. The chest pain seems to be random and I currently have a feeling of *inflamed* discomfort in my chest..and pain in my top left chest area near the arm pit.... breathing sometimes causes a pain in one of the *usual* areas in my chest. My usual areas I get chest pain are - > Top left, all over the center areas, just below the center part, top right.I noticed breathing also sometimes made that one spot left of my spine in the back hurt. IT almost feels like my chest is squeezed. I am sure if it was a heart attack I would probably be dead by now.. its been 3-4 days. Today it really has made me feel ill overall for some reason- like its gotten worse. Not only is it chest pain- no acid anymore btw- but i just feel ILL and only want to lay in bed. Its hard to describe how I feel... Something with my head where I just want to lay down to feel better. Being up and about (like I am now) just makes me feel worse OVERALL... my chest pain gets WORSE when I move around and betteer upon laying down. Same goes for the ILL feeling overall, better when laying down. One last thing I noticed today is my eyelids are very red and my lower part of my actual eye is bloodshot and red. Not sure what that means.... I have been popping IBROPHEN like crazy with not much relief. I am about to just go to the ER to see if they can find anything..... Note I went to my docs yesterday and he pretty much had no answers and just gave me the IBPROPHEN. He said I may have some nerve disorder which is causing all the pain.. and named a few possible things... (how could that just happen out of the blue?) ..... forget what exactly but he didnt plan on testing me for anything.... just sent me home with no answers. Well can anyone relate? ....... Another quick thing about my eyes, they have been getting progressivly worse since age 16 and that was one of the first things to go bad.... started with a few floaters no flashes or dark spots, to seeing *ant* like things which look liek floaters but only appear in sunny areas - like when the TV is on a channel that doesnt exsist looks likes ants- to getting dark spots when I look around in corners, flashes, halos around lights and more recently blurryness at ranges and night, double vision type stuff when looking at led lights, white flashes when looking at anything dark. Right now my chest hurts really bad from getting out of bed and trying to fnish this post..... will let you know how it turns out because this is messed up. Thanks,James i think the medication you are talking about is ibuprofen. You should be careful taking ibuprofen if you have GERD because it can make it worse. I would also check that no acid has gone into your lungs. I dont have any other answer for the rest of your symptoms. except that if you were voilently vomiting it could explain the bloodshot eye and if you are dehydrated with vomiting and a headache it could explain the visual problem.
    s240185 9 Replies
    • February 3, 2008
    • 06:23 AM
    • 0
    Flag this Response
  • Marfan syndrome can predispose you to spontaneous pneumothorax (collapsed lung- which you have had once already), and aortic dissection. These are both serious things that need prompt medical attention. If you have severe chest pain, you really should not wait to see a doctor if you have Marfan's.Also, they should be monitoring your aortic root diameter and valvular funtion annually. This is done with a transthoracic echocardiogram. If the root becomes dilated to 50 mm, you may need to get it repaired. Also, some medications such as beta blockers can slow the rate of dilation. If you really do have Marfan's (it sounded like some doctors were not sure), they should be carefully monitoring you.You probably already know this, but Marfan's also predisposes you to eye problems: cataracts, dislocated lens, and myopia. Not sure if this would explain your symptoms or not though. Have you been to an ophthalmologist yet?I am sorry you are having such uncomfortable symptoms. I hope you get an explanation for them soon.
    Anonymous 42789 Replies
    • February 3, 2008
    • 07:54 AM
    • 0
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  • It sounds to me as though you should see a geneticist. There is no simple test for Marfan Syndrome: http://www.marfan.org/nmf/GetContentRequestHandler.do?menu_item_id=3
    aquila 1263 Replies
    • February 4, 2008
    • 03:42 PM
    • 0
    Flag this Response
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