[Inny2009]

Im sooo tired...i just went to a different doctor again today. This time she is an internist and i saw her about a year and a half ago. Well I found that when i went to the ER on friday they told me i had mono. Apparently i dont have mono..or so she thinks. My white blood cell count is way too low to have just a weak positive for mono. Apparently the ER told me that cuz it was the easiest answer. No one can give me a straight answer. I also have a UTI. They dont know why i have had so many symptoms for as long as i have (two years). My internist suggested more bloodwork and medicine for my UTI and to see her back in three weeks. What doctors dont seem to understand is that means 3 more weeks of pain and fatigue and weight loss ...3 more weeks of struggling to work a laborous job while im stick thin and have to sleep on pillows so my hip bones and ribs dont rub on the mattress and need daily naps and am going bald. Whats even worse is in three weeks im not going to have an answer...just an answer at to what other tests im going to need to make a possible diagnosis. She said i could probably look forward to a lymph node biopsy just not yet..she wants to get her ducks in a row. She is doing her job. Im happy that a doctor is finally helping me. But I dont know how much longer i can last. I feel like im going to collapse...The excruiating body pain...my very tender stomach..my shortness of breath...im falling apart and I still have at least 5 weeks to keep going through this just to find out whats wrong with me. It wouldnt even be this bad if someone would have paid attention when i asked for help earlier. I am getting tired just writing this. How do people expect me to be a nursing assistant and go to school and take care of my baby...all while i can barely get off the couch ....thanks for listening to my rant...

[Rachie]

Im so sorry you are going through all of this. I hope the doctors find out what is wrong with you soon so you can start recovering and get on with your life. You are in my thoughts

[Inny2009]

thanks rachie...that means alot to me... (((((rachie))))))

[January]

Inny, is there any way you can get short term disability through your job? You need some rest.

I have a couple questions. Have they tested your thyroid? Have you been tested by a gastroenterologist?

I have recurrent mono at times and I can tell you that you are exhausted, your bones hurt, and your tongue is very furry. (Ick!)

I hope you feel much better very soon.

[Inny2009]

thanks jan for your support, Well i apparently tested fine on thyroid and no i never went to a gastroenterolgist...doctor number like 6 im going to now had orginially seen me a year and a half ago when i came to her with the swollen lymph nodes and joint pain and lumpy chest. I figured id go to her since she knew i had these same problems awhile ago and I was right...she is taking charge..however its going to take awhile for her to get all my charts together to make one plus i have to wait two weeks to redo all bloodwork and see if my UTI antibodic works...So all of that is going to take three weeks i will go back to her Oct 22. I would love to go on short term disabilty but we cant really afford for me to rest. Im just going to have to try deal with it all on my own. At this point im so physically falling apart sometimes its really mentally draining just thinking about going to my job and being a nursing assistant. It hurts just to walk up and down stairs..im so breathless...Im also afraid that whatever i have is now attacking my organs...my liver, my spleen, my kidneys, my stomach...sorry im going off on random tangents...lol did i mention it must be attacking my brain too?? Im trying to get as much rest as i can. Thanks jan, i really appreciate your support it means alot to me.

*im editing this to add my doctor said she doesnt think i have mono...she thinks that my liver and spleen are enlarged because whatever i have might be going for my organs...however i tested so weakly for a postive mono it doesnt make sense with my extremely low white blood cell count. According to her if it was an infection my white blood cell count would be high...she said a biopsy might be necessary to rule out lymphoma but who knows what the heck it is!

[Michah]

Inney,

personal question.......are you female and how old are you?

Just a thought about your situation......

Take care,

Michah

Have you also been tested for Lupus? here is a link....see if this sounds a bit like what you are dealing with......no worries sweet, just another thought

http://www.lupus.org/webmodules/weba...231&zoneid=523

[January]

(((((((((((( Inny )))))))))))))

It's a very good idea to bring up Lupus. That very well could be the problem, or you could have a series of auto immune problems that present as Lupus but aren't. I have a ton of them and while each Dr waits with bated breath to see when it's going to go full blown, they treat each problem individually.

Before it's all said and done, you're going to really need to be examined by a gastro so they can check out your digestive system. Perhaps if you have to have an MRI they can do some checking that way. I read that it's going to be available, but I don't know if it's in place yet.

Inny, I thought I couldn't afford to take off work on short term disability. I had too many people depending on me, and besides that, I looked at it as giving up and being weak. I have payed a terrible cost physically and financially for not taking better care of myself and taking the part time disability that I so desperately needed. Please, I ask for your well being that you talk with your Dr and see if she can put you on short term disability or arrange for at least a week off work. If you can, get someone to watch your child for you during the day so you can sleep.

Also, if you're not allergic to milk, get some Ensure High Protein shakes. Put one in the freezer until it's slushy, shake it really hard and then drink it. It will stay down, and in, better that way. I recommend Vanilla because chocolate can be hard on your system. Try to stay hydrated. If you can't keep down water, try ice chips. I can't tolerate Gatorade, but I can drink Propel and keep it down. If you see colored round spots floating around, you are severely dehydrated and need to go to the E.R. right away. I'm sure as a member of the medical field you know how to test the back of your hand for dehydration.

I am so sorry you are so sick and I hope your Dr. can get this resolved quickly. If you get too sick waiting for the results, go to the E.R. I apologize if I seem bossy. I don't mean to be at all. I've sort of been in your shoes and I didn't have anyone to watch out for me, so I'm trying my best to help.

Feel free to post to me or pm me anytime.

[Rhapsody]

Thinking of YOU.....

[Inny2009]

Thank you so much for the support It means so much to me! I am a 22 year old female. I thought of lupus too and when doctors didnt help me at first I requested for an ANA blood test. It measures antibodies and tells me if i have an autoimmune disease like lupus. It came back negative. It is very hard to get a false negative on a test like that so Im pretty sure I dont have an autoimmune disease. I might check into seeing how we could manage if i took short term disability. I have been taking ensure and forcing myself to eat some ...so normally in a day i consume an ensure and a palmed size amount of pasta...im not gaining any weight but at this point im not loosing anymore..or so im thinking. Which as long as im not loosing anymore thats ok with me. My husband saw me with my shirt off and said he can see every bone in my body...attractive huh...Im really afraid i might have HIV or something. Being in the medical field it is quite possible i could be infected with it. Im really hoping it isnt though. I worry about my baby. Im a big girl I can handle whatever it is but i really hope whatever I have doesnt infect or hurt my son in any way. I will feel so guilty. I did end up in the ER because I couldnt take the pain and weight loss anymore. I was hoping they might admit me for hydrational purposes and find out whats wrong with me in the process..I was wrong...they just gave me another wrong diagnosis that was luckily found out by my sons pediatrician go figure...I know Im very dehydrated...my urine is red and orange with lots of floating things in it.(not to be gross of course lol). And my skin rebound rate is slower than a snail...Im trying to drink as much as I can...I told my doctor that If my liver and spleen are enlarged and I have protiens and possible infection in my urine and I have extreme stomach tenderness when its touched something is attacking my organs...of course this doesnt make her want to go any faster..i still have to wait three weeks to see her again...oh well at least she is taking some action. Thank you so much for all of your support again. It really is making life difficult not being able to do what i want and eat what i want and doctors not helping me. I did tell my husband that if they decide to do an ultrasound or a CT scan and find out i might need dialysis or my liver or spleen is shot I will be very angry. When they do decide to do a lymph node biopsy and find out its cancer..i will be very angry. Im trying to deal with my anger now but its so frusterating when you know something is very wrong with your body and just because your doctor cant find it in a physical exam...yea like if you touch my belly and there isnt a basketball sized tumor in my stomach then i must be ok. I am trying to deal with my anger now...but i said if i have something like HIV and my baby is comprised then watch out because my mother bear will be coming out and alot of doctors will probably have to call security after I show up and flip out on them. I think i need therapy just to deal with this lol...thats why I come here and ask for support from my friends. You all mean alot to me and your ideas and thoughts mean alot to me. You guys and my husband and baby help me keep battling this and trying to overcome this. Thanks again.

[Yoda]

That sucks that you feel so bad but it sounds like you are on the path to a diagnosis and treatment.

Not so very good here with the problems you descibe. If it's a heart or multi-trauma I can fix it but I am too specialized and don't have a broad enough knowledge base to really help too much.

I am a bit confused about the mono test? I thought the test was pretty definitive but don't understand quite how the low white cell count can skew the results. Do you have a rash? When I had mono that was what clued them in to take me to a doc.

The ANA test is a good idea. How about testing the sed rate? That measures inflammation so might help.

Have they considered fibromyalgia? No definitive test for it but assessment & treatment is growing. I took Lyrica for that but we stopped it because I have lots of dizziness & apparently that is common with Lyrica.

Did you see a rheumatologist for testing?

For sure need a good assessment of immune system but sounds like you have a good doc.

Let us know what you learn.

[Inny2009]

hey yoda...thanks for the support. Actually according to my doctor I tested for a very weak positive. The mono test isnt very accurate depending on which one you get...apparently my white blood cell count is very very low....if the reason was mono then I would have tested a solid positive for mono. Mine was so weak it was borderline positive and negative...and with my liver and spleen so swollen and my blood test results were crazy...one would be way to high and another would be way too low...Im pretty sure its not fibromyalagia though i did think of that...but with such obivious drops and raises in my blood count and with all my physical symptoms they arent explained by fibro...thats a good idea though..but I also have had swollen lymph nodes in my neck for almost 2 years and chills and migranes all the time. Though fibro would explain the joint pain...

[Yoda]

H@ve they tested you for Lyme dise@se?

[Inny2009]

yep I tested negative for lymes disease, thyroid, diabetes and autoimmune diseases...thats why alot of doctors dont believe me..my chest xray came back fine, my bone scan came back fine and these blood tests came back fine. At first my blood work was normal except for anemia, and inconsistent liver enemze numbers. That blood work was done about two months ago. Now my blood work shows a white blood cell count of 38, i still have anemia and other abnormal results but im not sure what they are..they never explained them to me. The thing that pops up in my head though as a medical professional is that ok that just means i dont have lymes, thyroid, diabetes and autoimmune diseases like lupus. That doesnt mean nothing is wrong. Those are specific tests. If it was something God forbid say Hodgkin's lymphoma however, of course all that bloodwork would come back negative. And that would explain normal blood work until now because it was confined to lymph nodes and now has spread to an organ...explaining my swollen liver and abnormal fluctuating liver results and enlarged lymph nodes as well as my now CBC which is abnormal now. It just means whatever I have is now finally being picked up. It could also explain HIV which I could have picked up from being in the Healthcare field and working with people some of which do have HIV and AIDs and that would explain my low immunity if i do have mono and my 3 ear infections and UTI and random fevers. Im not saying I have cancer or HIV. What I am saying is that just because I tested negative for the above mentioned things doesnt mean Im crazy and have nothing at all and its in my head. I dont understand how doctors need such obivious clinical back ups to make a diagnosis. There have been plenty of cases where there are really sick people who just dont have an immediate obvious diagnosis. That doesnt mean they are crazy and hypchondriacs. It just means the doctors are going to need to do alittle more work (God Forbid). And same thing that goes for people who have no symptoms. That doesnt mean they dont have something. They may feel great and have routine bloodwork that shows serious issues. That doesnt mean they need to be ignored because they are asymptomatic...it still needs to be addressed. Sorry, Im still angry lol...thank you for bringing up the possibilty of lymes. That was a good idea. thanks again!

[Yoda]

Were you tested for HIV? It shows up positive ~ six weeks after exposure, I believe. I got stuck with a sharp that a surgeon left on tr@y @fter @ procedure. THEY @re supposed to put the sh@rps @w@y & I pick up the rest of the mess. T@lk @bout pissed. Th@t doc & I h@d @ good long t@lk @bout sh@rps policy.

Which of the white cells is it th@t is low? Did they give you @ printout of the differenti@l? Th@t would help me underst@nd more. Not th@t I c@n solve your query. Not @ physici@n here but I @m @ RN @nd @ d@rned good one with he@rts & tr@um@ but your problem is out of my le@gue but @s they s@y two he@ds @re better th@n one. New eyes never does hurt IMO.

You @ren't now or previously t@king cloz@pine (Cloz@ril), @re you? I would hope th@t if so the doc would be bright enough to monitor your WBCs for th@t. @ctU@lly I don't think they h@ve much choice. (In the US@ so if you're not, it might be different). It h@s @ bl@ck box w@rning. I t@ke it & it is fortun@te I @m not @fr@id of needles bec@use I @m @ pincushion.

[Inny2009]

That must have been terrible to have been stuck with a sharp!!! I hope you had a good follow up with a doctor on that one. Hey any advice from anyone is awesome at this point..ive even tried asking my son (who is 6 months old) he just ends up pulling my hair...like im not loosing enough as it is!!! See this is where im confused with all my testing im not sure if i was tested for HIV. See im thinking i might have been tested when i got pregnant...im thinking thats a manditory blood test since it affects your baby...but then again im not sure. I do plan on getting retested just in case though. I was tested in Jan for STDs and stuff because I was changing partners from my ex to my now husband..and i like to be safe (they laughed at me lol). That all came back negative and i had had symptoms for at least a couple months before them. So im thinking HIV may not be a possibitily but i wasnt sure how long you can get a negative but it still be possitive. To give you a brief overview here are my symptoms

Enlarged lymph nodes on each side of my neck and by my clavical- 2 yrs
6 enlarged joints in my chest near sternum- 2 yrs
Fatigue (could be due to anemia)-2 yrs
chronic joint pain-2 yrs
elevated/flucating liver enzemes- 2 yrs
more current symptoms within the last 2 months
extreme hair loss (going freakin bald!)
naseaua/vomiting
weight loss/appetite loss 17 pounds in 3 weeks can no longer gain weight
swollen liver and spleen
migrane headaches
random fevers ranging from 99 to 101
tender swollen stomach
lower back pain
infection after infection- 3 ear infections/UTI/possibly mono now
Reynalds syndrome (that runs in my family and might mean nothing)
Protein and blood in urine (could be from the uti)
Im not sure about the CBC...all i know is that my white blood count is 38 and should be 70...i know i have anemia thats all i know...

Its alot i know...i also tested negative for arthritis..forgot to mention that...it does look like i might be making it up since there are so many symptoms...random symptoms...but im not lying...believe me i love food to much, i love my hair too much...and honest a bumpy chest is not my thing lol..however you can see and feel and the lumps and nodes and see my hair is falling out...my doctor and family members did tell me i wasnt imagining that (i began think i was so nuts i was haccuniating)

[Yoda]

One working computer (well semi-working see my discl@imer) & I h@ve been ch@tting @ll over the web for eight hours now so son w@nts his turn.

I'll h@ve to think @bout your issue & see if I h@ve @ny new thoughts or not.

Off topic - my son w@s six months old & I fed him beets. L@ter he b@rfed & I p@niced & thought oh god my b@by h@s GI bleed!!! Duh, Beets, yod@. Never ever fed him beets @g@in. LOL

[Inny2009]

roflmao thank u so much 4 the support!