Undiagnosed and going crazy!

[TruBlu]

I have been dealing with undiagnosed symptoms since mid-October. I've had lost of tests but no answers. It is so hard to focus on normal daily living with such a worry in the back of my mind. I just keep telling myself that I am not "sick" until they tell me I am, but it is really hard sometimes.

 

[Mackey Mouse]

Hugs to you... I may have to go and reread what your symptoms are...lately my brain is not doing too well and I am thinking here, I know I read it...didn't I? I did a bit of a search and saw that you were asking for information on surgeons and that you were having your first physical a while back, but am not sure what is going on with you... If you want to share with us, maybe we can help.

Keep plugging if you are not feeling well... every test in the book needs to be done until they find out what is ailing you...

 

[jann1033]

don't know what your symptoms are but i have an illness that is hard to diagnose, partially due to some weird thinking in the health care community( that is at least improving a little after 20 yrs but not much yet) partially due to there isn't a test for it so they have to basically rule everything else out first.

so i know it is terrible to know something is wrong and not have a name for it...there is really nothing you can do but till you find out listen to your body and don't do anything that makes it feel worse. try not to let it bother you if others expect more than you can do or say cruel things no matter who they are, Dr or layperson( like the jerk neurologist i went to who told me nothing was wrong with me...hmm i used to be able to walk 10 paces now i can't, didn't realize by walking before i was preforming a miracle). for me at least that is way easier said than done... and maybe look some stuff up on the Internet or if you have an understanding Dr ask him and see how you can cope with the individual symptoms till you can get something to treat the illness if you can.

this might sound harsh but for me i had small kids when i got sick and since the Drs. had no idea what was wrong with me( I have CFS but at the time was bedridden and getting worse so they thought probably terminal cancer they couldn't find or some thing similar...this was almost 20 yrs ago so not as advanced dx testing as now available) i knew i could not deal with some things( like being around to see my kids grow up) so i had to stop myself from even thinking along lines like that...sometimes you have to just force yourself to have as positive an attitude as you can.

try to remember eventually you'll get past this and hopefully they'll figure it out and be able to treat you successfully

 

[minkydog]

It took months to diagnose DH--they thought he had everything from hypochondria to lung cancer Even after his diagnosis(sarcoidosis) some of his docs refused to believe he felt as bad as he did and they treated him as if he was malingering. Not until he was admitted to CCU in septic shock & heart failure did they realize that he was really, really sick.

I know it's frustrating to not know what's wrong. Just because there is no diagnosis doesn't mean there is nothing wrong. It only means the right stone hasn't been turned yet. I wish you peace and lots of energy over the holidays

 

[TruBlu]

I think I am just a mess! To me it seems like there may be more than one thing going on and that seems to confuse the doctors.

I have had swollen lymph nodes under and down my left arm since October. Because I was having some strange breast symptoms too, I started there. Last week the Doc at the BC Clinic gave me the wonderful news that she was sure it wasn't IBC!!! So, we are watching the symptoms for 3 months. She said that the arm was not related to the breast symptoms, so I moved on to my primary card doc. Before I got in to see him I developed a sinus infection causing lymph nodes in my neck and face to swell. That was about 3 weeks ago, but they haven't gone down.

Then, I started having pain in my upper right side (just under my ribs). The doc could feel swelling there, so he ordered blood work and a CT scan. (And while I was there I also got an MRI of my shoulder and neck.)

So... CBC was normal (borderline anemic), CT scan showed nothing except the hernia that I knew I had, and the MRI showed nothing that would be causing my problems (just a bulging disk in my neck and a cyst in my shoulder).

Since then the pain in my right side has gotten worse and spread to my back. My lymph nodes are still swollen, and I've just started to feel bad. I'm really tired, have chills almost every night, not much of an appetite (along with a few other symptoms)....

SO yesterday they repeated the CBC and I go back in 4 weeks for follow-up. He didn't seem worried about the abdominal and back pain since the CT scan was good - but I can't help but be concerned!....

Anyway, I'm sorry to unload all of that.... But it makes me feel better to tell someone!!! THANKS!!!

 

[safetymom]

I am sure it is frustrating. I will keep you in my prayers.

 

[jann1033]

this will sound crazy and i am sorry it is so difficult for you right now but if it is more than one thing it is good they are still searching and not just latching onto one symptom...
that is one reason it took me a over yr to get a dx....they kept thinking every new symptom was related to my av malformation( which is in my leg) it wasn't till my other leg started dragging( and it happened in the dr office rather than just at home) that they ruled that out totally as the cause for the new stuff...( even though the cardiologist said they were crazy to even be considering the av problem as the culprit ) so no dx is better than a wrong dx even though it will be hard to deal with till they find out what is up.
it never fails everytime i go to a new dr( hard to find one who really knows or understand cfs and my initial dr moved) they latch on to " The LEG" ( scary music chord plays in the background) as the problem like a dog to a bone so now they will have both The LEG and the diabetes..so i'll never get any help for the cfs( the worst of all of them for sure and what had disabled me)...good thing my new dr is young and not ready to retire or something

 

[Mackey Mouse]

There must be a reason why you have swollen lymph glands....isn't that usually a sign of infection?

I read that you had a sinus infection and sometimes I believe it takes a while for enlarged lymph nodes to go down.. hugs.

The chills etc....they have checked your thyroid? What about looking for lyme's disease.. there has to be a reason for these symptoms..

I hate it when they cannot find out why..

 

[jann1033]

how tired? can you function or are your normal activites limited, like maybe by 50% or more? not saying this is you but a couple things fit( fatigue, chills, swollen lymph nodes )
so you may want to check this link out ....

http://www.cfids.org/about-cfids/do-i-have-cfids.asp

http://0-www.cdc.gov.mill1.sjlibrary.org/cfs/cfssymptomsHCP.htm#primary

 

[TruBlu]

how tired? can you function or are your normal activites limited, like maybe by 50% or more? not saying this is you but a couple things fit( fatigue, chills, swollen lymph nodes )
so you may want to check this link out ....

http://www.cfids.org/about-cfids/do-i-have-cfids.asp

http://0-www.cdc.gov.mill1.sjlibrary.org/cfs/cfssymptomsHCP.htm#primary

Not really that tired... I just feel like sleeping more than usual.

 

[TruBlu]

I got a call the day after Christmas from my doc. I am now officially anemic. They are going to do another blood draw in the morning to find out what type of anemia. I am really scared. I've been all weepy these days....

And I now have some huge swollen lymph nodes in my ankles!

 

[Mackey Mouse]

HUgs to you but at least you are stepping in the right direction get some answers..

Try to keep positive, so easy to say, but try and once they find out what is causing this, there will be a treatment plan in place and you will be on the road to recovery... I am sure of it..

Hugs again..

 

[Christine]

I got a call the day after Christmas from my doc. I am now officially anemic. They are going to do another blood draw in the morning to find out what type of anemia. I am really scared. I've been all weepy these days....

And I now have some huge swollen lymph nodes in my ankles!

TruBlu,

I've recently become anemic too. I don't have the odd symptoms that you are having but I've got *something*. I go back into the doctor on Tuesday to check on the anemia again. We think it is iron deficiency but I still haven't been thoroughly checked out.

 

[Shugardrawers]

To know that something is wrong and not have anyone listen or know the answers is the most frustrating thing in the world. I know. I'm keeping you in my thoughts.

 

[TruBlu]

Thanks for all the support guys! I spent last night in the emergency room. I started having severe abdominal pain and bleeding. I'm still hurting, but not bleeding anymore. The anemia isn't any worse, so they didn't admit me. Still going crazy... I guess I'm getting used to it!

 

[TruBlu]

OK, now the upper abdominal pain has gotten so bad that I'm not even worried about the lymph nodes anymore! The pain is on the left and right side right under my ribs and hurting into my back. I'm a mess...

 

[Pea-n-Me]

Am sorry to see you're still not feeling well. I wrote out a long post but decided to PM you instead of post it here. Hope you get some answers soon.

 

[Christine]

Hope you are doing okay now. Please let us know!

 

[Mackey Mouse]

Hugs to you...I was reading your symptoms and they were making me a bit nervous.. Have you had CT Scans...if you have said yes before, please forgive me as my mind is mush and I probably do not remember..

You have to get in there and fight for your rights and get some answers.....no one should be suffering with no answers, not with what we pay for medical insurance. These are not the dark ages....they need to find out what is causing you pain..

Please keep us in the loop and try to stay focused on getting some answers, it is so hard to do that when you do not feel well.. Hugs again.

Edited here: I saw that you had a CT scan and that showed nothing.. are there tests stronger than a ct scan... what about a pet scan? Just wondering.. Hope you are feeling somewhat better today.

 

[jann1033]

so you went to the er and they sent you home bleeding cause the anemia wasn't worse? did they give you any explaination for the pain and bleeding?where are you bleeding, internal, external? this makes no sense...have you been to more than one dr? if not i think i'd go to a new internist and see if they can't see things from another perspective.