Hello Friends of the new Research board... What a great idea. Perhaps I can get help here...
I have posted my problem in a few of the other boards here, including the Thyroid, Lupus and Leukemia boards but I figured it would not hurt to place a post in here. Here is my story:
Hello All, Sorry for the length of this post...
I actually may have posted in this board sometime ago so I apologize if I did. For along time I was "chasing" HIV I suppose you could say, but have pretty much exhonerated myself of that with 8 months worth of separate tests. At this point I am pretty much left with either Pancreatitis/Pancreatic Disorders or Leukemia for these kinds of symptoms... And I have been feverishly reading up on Leukemia for the past two months.
Since two sexual contacts in February of 2004 I have been experiencing the following, and I will list my greatest botherers and issues of concern first:
-All initially started with enlarged lymph nodes in my neck that lasted for a month that were painful, and then went away when treated with an Antibiotic (but they could have just gone away on their own ya know). Around the time I started the antibiotic or perhaps even just before it, I also developed...
-Butterfly like rash on my cheeks and nose which is occasionally infrequently itchy.
-FLOATERS GALORE in my eyes that have grown to be more since Day1 I noticed them, and the vision in my right eye has been decreasing ever since (I read leukemia cells can infiltrate the eye, as well as Primary CNS Lymphoma).
-Fever and chills at different intervals since the initial Lymph node problem. Also a feeling of heat "rushing" into my head sometimes.
-Abdominal pain since about may of 2004 which started in the center below my ribs and gradually moved to the left just under my ribcage. It is now constant and I can also feel it in my back if I breathe in hard or lying down. I believe this to POSSIBLY be my Pancreas as I am overweight (5'9" 230-240lb). Along with pale/fatty stools on an almost daily basis which are associated with the pancreatic disorders. Also recently ive noticed an ever so slight bulge or unevenness in the place above the pancreas under the left rib cage.
-Headaches at the back right of my head which tend to pulse with my blood pulse rate, though I believe Ive had this for years.
-What I believe to be paling of my skin, because I can see dark circles under my eyes all the time. But I seem to be the only one who notices this.
-Petechiae that come and go, maybe one or two at a time.
-And a shmorgesborg of other symptoms in between, everything from dry mouth / mouth ulcers for weeks at the beginning, to loss of appetite at the beginning for about a week and more.
So I honestly believe I am just about worse off than anyone else Ive ever read about and YET? No diagnosis...
-Original doctor in Kansas took blood tests for all STDs at 4 weeks. All negative, WBC came back elevated, but she blamed this on an infection I also had at the time (I never found out what this rogue infection was).
-Went back at probably 8 weeks and had another range of tests, nothing extraordinary.
-Moved to Texas, started seeing new doctor recommended to me by an oncologists secretary I tried to go to first. He ran his own set of blood tests and the last ones I remember were in August 04. Blood counts not only normal, but everything was 100 PERCENT within range, SOLID. He literally told me he would "kick my ***" if I came back in complaining more.
-When I returned again, he agreed to send me in for an Abdominal CT Scan with IV Contrast. Of course... The CT Scan came back absolutely normal with nothing, no enlarged spleen, no pancreas issues, nothing outside of mild diverticulosis possible diverticulitis. This was August 04 as well.
-I got a bad foodborne illness in February and went back for an emergency session with another one of the doctors in the same office, explaining to him my then similar concern of the pancreas issues. He ran another blood test on me and additionally checked cholesterol levels and serum lypase... Again... everything normal.
-Almost forgot! When I noticed the eye symptoms... went to the mall for an optOMETRIST to look at my eyes. Got the whole round... dilated pupils etc. 20/20 vision, slight "astygmatism" in the right eye. Fine, not satisfied I found myself a real genuine opthalmologist... Same conclusion and the floaters are "normal" despite their sudden appearance and how many of them are there according to him. I saw this same guy twice in the time I was in TX.
I am at my wits end, both physically and emotionally. It is increasingly difficult to continue working with both the emotional fear that I have a major illness, and the fatigue and pains in my body. I have gotten a tremendous amount of reassurance from the wonderful people on the pancreatitis group I visit that all of my fatigue and other symptoms could be due to Pancreatitis alone, but there are just too many other symptoms for me to even begin to nail down whats going on. I have a hard time believing there is any systemic illness that can bring you down this much at times.
I finally visited my new doc here in PA recently, and he was the first one who seemed to take more notice of the swollen tonsils that have not gone down since the original incident as well. I am scheduled to see an ENT for this in early june... Of course now I feel that whatever is going on back there has been caught too late, and there is a reddish light patch on the tonsillar pillar next to my right tonsil. Red patches in the mouth are NOT GOOD from what Ive read. I also had a mildly positive ANA test so he scheduled me to see a Rheumatologist in Early june as well. All other bloodwork taken recently has been normal, because of normal bloodwork, docs and ER techs tend to shrug me off. I feel like up against a wall.
What do you guys think? I feel like im staring down the barrel of a gun and no one can help me.
Sounds like to me that you may have Mixed tissue diease that I have. I took years to finally get a diagnosis. I do have to see a Rhemmy every 6 weeks for blood work. My ana is elavated and also my white count, it is 16. The high white count has been going on since 1990. Keep pushing the docs till you get one that beleives you.
You've been through the ringer -- or maybe even several of them. I tend to agree with the previous poster -- you seem to have a real mixed bag of symptoms and perhaps even several different diagnoses to deal with -- eventually.
I have a suggestion for how to go about your research:
Create a spreadsheet for yourself and begin looking for cross-references. Maybe you begin by listing all your symptoms down one side of the piece of paper. Then start with one possible diagnosis (diagnoses would go across the top of the paper) and go down through the list of symptoms using checks and Xs or plusses and minuses or anything else you like that line up with that diagnosis. Then try another possible diagnosis (or a variation on the first one) and do the same thing. Eventually you should be able to weed out the impossibilities which would narrow your list down, at least.
You can also research just the symptoms. And group them -- all the eye problems together, all the gastro symptoms together, etc. Each symptom would suggest a variety of diagnoses -- and they should correlate with what your findings are with each diagnosis.
You'll also have to allow for some of your symptoms showing up because your head thinks they should be there. Some of them will be red herrings.
The other thing to do, if possible, is to get ahold of your medical records and cross reference your spreadsheet with the findings in the records. The test results can be especially helpful. You can pick up terminology and phraseology that will give you even more details to look up.
Once you've developed your spreadsheet(s) you can take it to your next doctor's appointment. Even if you can't find a correlation, the doctor may be able to -- or it may even open up a whole new avenue of thought.
Get tested for lupus. It's a simple blood test. Lupus is an autoimmune disease that can attack any part of the body. It is also associated with a "butterfly" rash(across cheeks and nose) as well as ulcers in the mouth and inside the nostrils. Hope this helps, but if not, don't give up!
Yes, I had a mildly positive ANA recently, so Ive been referred to a Rheumatologist. I just have a hard time believing so many differing and sometimes disabling symptoms can come from somthing like Lupus.
I have been having some of the same symptoms as you. Started with a 102 fever, sore throat, loss of appetite, etc. I am feeling better but something still doesnt feel right with me either. I do have a lot of anxiety but this feels different. Like you all my blood tests check out. I was negative for an ana and the ony thing that looked to be a problem were my liver enzymes. They were in the 1,000's. They have since been coming down and my dr ordered a ful ebv profile diagnosing me with acute mono, the thing is, I had mono when i was 15. I am confused and very frustrated. If you need to talk or compare symptoms i am here. Hope you are doing better.
I got a cautious diagnosis of Lupus today at the Rheumatologist so Ill be following it closely to see what happens or if thats even it. I was prescribed an anti-malarial medication to start with before being put on any Steroids.
Just wanted to congratulate you for hanging on in there!! i have been severly ill since jan 2005 i just kind of dropped with something and nevr got better. i lost weight started collapsing from headaches had a couple of what seems like seizures developed horrible rash on my face. got swellings in my face. hair loss facial skin peeling. My friends wre horrified at what happened to me. but you try explaining how different you look to a doc that has never seen you before. i got enlarged lymph nodes with out pain. real swollen jaw and pain there too. also got pain down left side. also severe episodes of weakness where i was bearly able to walk up stairs without assistance. my moods changed too.
Thing is my bloods never showed anything unremarkable either is what they kept telling me. Low potassium positive ebv virus esr level six and then two. Excess protien in urine, elevated growth hormone.
i have been pushed from pillar to post. first they thought it was auto immune but rheumie told me had ahd a bad drug reaction, next it was angio derma but reacted bad to anti histamines and steriods, next it was a pituatary tumor but scan showed nothing, some docs have suggested lupus again to me but ana negative. they think its possibly viral or infection now but seem to want to treat it as a post v or i syndrome fat lot of good that is when im still suffering. Anyone im going to enter my own post on the research board to see if i can get any answers there. Im now thinking lyme lymphoma lupus growth hormone ?? yning is i wanted to say your not alone!! This thing has been a total nightmare for me too. such a dramatic onset and decline. Makes you think what happened to you?? Yeah and the docs do look at you like your going crazy but i think its cause they can't fathom it. thing is im an educated articulate person im sick so i want to get better and i will be on at them until they get me an answer. I never even went to the doctor before all this happened ha ha. Like you i have not known where to turn. Being sent home from a doc with no answers is like a death sentance. I have been suisidal cause of this. Its bad enough being sick but when they try and put it on you as well well you really do loose the will to carry on. Im having a tough time too so thinking of you and hoping we can all get our lives back.
take care of yourself and if you need to chat get in contact
I had a pain in my lower left rib cage it turned out to be acid reflux disease or GERD and cleared up when I took Pepcid. Your symptoms are most likely not related to one illness. Exercise, lose weight, eat well with less carbs, take antidepressants if needed, check for GERD, sleep apnea, and TMD. I found if I stop focusing on my body and try to get busy and enjoy my life, I get better.