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I apologize as this post is quite long but I am at my wit's end and willing to take any help I can get. I am looking for any opinions as to what you might think is wrong with me. I am a 29 year old female.

The medications I take are ones that I have been put on recently. They are Allegra, Vicodin, Folic Aid, B-Complex, Vitamin D, Daily Probiotic, Pepcid, and I am also on two different antibiotics right now, Clindamycin for the abscess I got three weeks ago above my teeth and behind my nose (This is the second course I have been on for this, I seem to be having a really hard time getting rid of it) and the other is Nitrofuritan for the kidney infection I recently developed.

Over the last ten years I have seen my GP on several occasions complaining of joint pain, fatigue, and feeling unwell. I have had both positive and negative ANA’s but other than that they never found anything that confirmed why I was feeling so badly except that I was anemic. They put me on iron supplements and after a couple years it seemed to resolve. In 2009 I got pregnant with my second child and was very ill and then at 5 month I lost the baby to intrauterine fetal demise. When they did the pathology they found massive infection in the placenta and fluid but could not tell me what from. After I delivered I became very ill and have to take several rounds of antibiotics and was almost hospitalized. I never correlated losing the baby to something that might have been going on  so I never really further pursued the issue of feeling badly until last year.

Starting last year around May I started having low grade fevers ranging from normal to 102 degrees or so. They never are consistent and just seem to crop up randomly. In July of last year I underwent a hysterectomy for endometrioses and pelvic congestion syndrome. I was feeling very badly and my gynecologist at the time told me it was possible the fever was related to what was going on. So I had the surgery, the only complication was very low blood pressure which they couldn’t seem to find an explanation for, but the fevers never went away afterwords. I think it was the end of August when I started getting more symptoms. First it was my cervical lymph nodes. They swelled very large and became painful. A few days after the initial swelling I woke up one morning and both my hands and feet were beet red and extremely swollen and painful, so much that my wedding ring had cut into the side of my finger. Then came the rash, under my skin, red, and lacey. Of course I was having the same fevers during this time and felt extremely fatigued and sick. I went to my GP at this point and he was unsure of what might be going on and decided to run some test, blood cultures, and sent me to a dermatologist for a biopsy of the rash. The blood cultures came back negative for infection. The other blood work showed high bad cholesterol, low good cholesterol, low levels of vitamin d, B12, and folic acid, low RBC count but ferritin level of 136, negative ANA. The biopsy showed superficial perivascular dermatitis, which they told me was some kind of inflammation around my blood vessels, but they didn’t know what it was caused from. My GP then told me that he thought I should see a rheumatologist. So I chose one of two in our town and started a battery of tests with him. At one point I had another episode of the swollen lymph nodes and they sent me for a CT Scan to check sizing for a biopsy. The minimum biopsy size is 1cm and although I had multiple enlarged nodes they were all around 9mm so they wouldn’t do the biopsy. I have been tested for rheumatoid arthritis which was negative several times, then came back the last time positive but had a normal titer. He x-rayed my hands and told me I have the beginning of osteoarthritis in them. Then there was the test for Wegners Granulomatosis, in which my anti-pro3 titer came back extremely high. He told me was unsure of what it meant and just told me it was inconclusive (I have since had another doctor tell me that anti-pro3 is very indicative of Wegner’s. I begged him to re run the test to rule it out, which he finally did the last month I was under his care and it came back negative this time.

He also tested me for ANA which was positive then negative then positive and now negative again. I was tested for Lupus and Sojgren’s. The actual Lupus test was negative but the Anti-SSB’s for Sojgren’s cam back at 0.9 which was the maximum cap for the high reference range. When I was tested again for it this April it came back as 1.0 which was flagged as high. Then I had a third test for Sojgren’s this month and it was back down to the maximum cap for the reference range of 0.9. My new rheumatologist did not seem concerned. My recent kidney function test cam back at a 78% which is considered stage 2 kidney disease however currently I am just being monitored for function every six months. I know I have been tested for several other things, which I would have to review my labs to be able to say for sure. But my test results are always mixed or inconclusive. One time everything will be unremarkable and then the next set of tests with have random things showing as positive but never enough for him to know what’s going on. They have taken my ESR several times, sometimes it’s normal and other times its just barely in the range they considered high but apparently not high enough to be deemed significant. They recently tested my RBC count again witch was low and my ferritin has dropped from a 136 7 months ago to a 36 now, again the doctor said I wasn’t anemic and didn’t seemed concerned that it had dropped over 100 points in 7 months. I have what I think is chronic EBV and also chronic CMV. I think it is chronic because every time I have been tested for it my titers are off the charts.

As for symptoms, the list is long. Aside from the malaise and extreme fatigue, I still get those lacey rashes, swollen hands and feet that get red and feel that they are going to spontaneously combust (this also happens to my ears as well), daily headaches, joint pains (sometimes my body hurts so badly I feel like I’m going to die) I vomit almost daily in the morning and often feel nauseous throughout the day. I was recently diagnosed with IBS, and I have extreme reflux from pretty much everything I eat. I have dry mouth, skin, eyes, and it seems like the more water I drink the thirstier I am and the more it dries out my mouth. When I get sick or have surgery I often have trouble recovering. I get chronic UTI's and kidney infections, horrible cold sore out breaks, etc. Also it seem like if I get a UTI or cold or anything that dampens down my immune system, it is followed by a barage of things. For example recently I developed what they told me was an abscess above my front teeth and behind my nose, except there was no reason for the abcess, no damage to the tooth or anything. Nevertheless it was huge and they immediately got me in and surgically lanced and drained it. Three days later I developed a UTI that turned into a kidney infection, then I got a head cold and then I got two cold sores in one week. It seems like my whole body is falling apart. The infection still hasn't cleared up and I've had two continuous courses of antibiotics. I get sharp pains in my abdomen and what I think it nerve pains in my legs and arms (although no one has officially told me what they are). I get ringing and drainage in my ears, and have chronic sinusitis. I have noticed some memory loss also. I have started breaking out like I’m a teenager and they are always very sore and take forever to heal, I get it on my face upper back and sometimes shoulders and neck. I also have Raynaud's phenomenon and livedo reticularis.

My last rheumatologist told me I showed evidence of some sort of autoimmune or connective tissue disease but he said he could not make a definitive diagnosis and there has also been some mention of possible vasculitis but again no one will give me a definitive diagnosis. At one point he told me it could be lymphoma or some form of cancer and suggested I get a malignancy workup. So my regular doctor referred me to an oncologist who didn’t even run any tests, she just took my history and said that she felt pretty certain that it was not cancer and felt very strongly about it being autoimmune.

So I felt like I wasn’t getting anywhere with my last rheumatologist and felt he was cold and uncaring and so my regular doctor sent me to a new rheumatologist out of town. This new doctor told me he was going to disregard all my previous tests and run his own. So he did this and tested all the usuals, ANA, ANCA, Ferritin, and some specific ones for different autoimmune diseases etc. All these tests came back negative this time along with my ANA.  He said he would like to retest in 6 months and then referred me to an infectious disease specialist. So that’s where I am at right now, more waiting, and still feeling terrible. I am more than happy to answer any additional questions you might have. Thank you so much for listening.

 

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I read all you are going through and I'm sorry I'm not an expert so I could give you more professional advice, but, you have been put on Allegra - have they done any allergy tests to see is there anything specific that you might be reacting to? Because this definitely sounds like major problem with immune system (even to a amateur)- from infections, to allergic break-outs. How long before you see a infectologist?
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Thanks for your response nikols. I have been on Allegra for years for seasonal allergies. They have tested me for some forms of allergies i.e. celiac etc. Nothing came back positive. I just found out yesterday that my cortisol levels are very low so maybe that has something to do with all this but of course its more testing and more waiting until I find out. I see the infectious disease specialist on July 5th, so at least its getting closer and if they can't find anything at least its one more thing I can rule out.
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Well, hormones are something I do know a thing or two - cortisol is one of the hormones that are the part of the whole "stress reaction" of your body - it's supposed to be secreted more when your body is trying to fight the infection and boost the immune response. So, this is something that does make a difference because if your cortisol level is low than also the immune system response is low and one thing you should also look into is what is causing this. This hormone is secreted by adrenal gland (located above your kidneys) and as all adrenal hormones, it cortisol also has impact on basic body functions, from body temperature, to blood sugar levels (dry mouth and constant thirst you described) and secretion of other hormones. I think that you also must check what is going on with your adrenal gland. Have you been tested for cortisol levels before?
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Hello Nikols. I have had one previous test for cortisol and ACTH but the results seemed weird to me and the endocrinologist said all the labs were normal. My GP just tested my serum cortisol again and said it looked normal but then ordered a Dexamethasone test for my adrenals in the morning. It is my understanding that the Dexamethasone test is used to diagnose Cushing's Disease, which I only have a few symptoms of. Now on the other hand I do have lots of the symptoms that coincide with Addison's Disease, but read that I need a different kind of test to diagnose that. Do you know why a serum cortisol would come back normal but a 24hr urinary free cortisol would be low? Both tests were taken at the same time. I am so confused with all this and my doctors keep passing me around and ordering tests that seem contradictory to my symptoms, I just don't get it. Here are my last lab values for cortisol, they were taken mid May.

Cortisol Urinary Free 24 hr

Cortisol, F, ug/L, U            <1               (Reference Range Undefined)
Cortisol, F, ug/24hr, U       <2               (Reference Range 0-50)

ACTH , Plasma               17.3 pg/mL    (Reference Range 7.2-63.3)

Cortisol, Serum             14.3 ug/dL     (Reference Range 2.3-19.4) (Reference Range Cortisol AM 6.2-19.4) (Reference Range Cortisol PM 2.3-11.9)


The also ran a thyroid panel with all the important ones and they said it cam back spot on within the normal range.

I would appreciate your thoughts on any of this.
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halcyon0131



Hi, I just joined this group and read your post. It sounds like your talking for me! I have been going thru the samethings for almost 5 yrs. now! I have been to everykind of doctor you can think of. I also was run off by the cancer dr's, Infectious dr's, dermo dr's. etc. I'm on my 2nd rehum. dr.

I have had more pos. ANA's than neg. with titer of homogenous each time. My White blood count has been high for the entire time until in the last month it's back in the norm. range. I had a Sed. rate of 99 at it's highest. And it also has been high all this time until recently. My C-reactive protein has also alway's been high. It was 10.9. And the C- Reactive protein high sensit. was 125.75 normal is 3.00. My RBC was 4.19 low. ANA was pos. w/titer 1:320 ( I hope that's how you read it.)

D Dimer was 498 H Norm. 0-230. I was also pos for Lupus Anticoagulant and dRVVT 45.8 H < 37.0 NORM. Anyway they can't find what is wrong with me either. My hair is falling out, my legs hurt so bad and swell sometimes so bad I can't wear shoes and they are also hot. But no answers for me. What is it that we have?



Thanks for listening noone else seems too,

Sicklady
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Hope this post can help...

GLUTEN... for some of the issues??

Some think that they can't be Gluten intolerant because they have no GI or stomach issues. Not true. My huband is gluten intolerant. He has NO stomach issues at all, but he has dermatitis hepitiformis. He gets these horribly painful sores on his knees, elbows, forehead. He was misdiagnosed by a dermatologist and 2 allergists. No one knew what it was. He was in such pain.

I finally found photos of his sores. He took them to his doc and told him he wanted his sores tested. It was gluten. As long as he stays away from gluten, he is fine. As soon as he accidentally eats gluten, he gets his sores back.

We feel for all of tose that are also misdiagnosed. Gluten effects everyone diffferently. Try going off gluten for 3 weeks and see if you see a difference. I bet you will!
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Have you ever heard of Ehlers Danlos Syndrome (EDS)? This is a connective tissue disorder that is in my family. The geneticist says one in 500 have it but doctors say 1 in 500 000. I am type III.

Besides all the symptoms you've listed we're hyper flexible and can wake up with dislocations. Velvety stretchy skin,  easy bruising, weird scarring etc are also symptoms a few of the symptoms. Every patient is different and might have less/different symptoms. There are even eds patients that don't have chronic pain in the joints.


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Its a year since your huge post am wondering how it all turned out? are you ok now or was it wegners? Sometimes we get so consumed with illnesses and we can get depressed or anxiety and it all gets worse,I swore blind my constant infections, chest pain,breathlessness etc was something sinister, I had heart tests, xray etc etc in the end my test were a picture of health all good levels and they said apart from needing an osteopath for locked ribs(causing some chest symptoms and breathlessness) that I was basically stressing myself into a frenzy and makng all symptoms worse,they say mind over matter and in my case I am heaps better 3 weeks after all my clear tests came back. Hope you are ok and it wasnt any auto immune type thing or WG,sometimes our minds can create severe real symptoms and in turn our minds can tell us we are fine. I hope for you like me it was more about anxiety worry and stress then any severe disease.My nephew is 31 now and has WG and it is really terrible he got diagnosed in full renal failure at 25yrs old after only a few months of flues, aches and feeling unwell. Hope to hear back soon.
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I have a connective tissue disorder called EDS and I'm type III. Ehlers Danlos syndrome. I test neg for rhum. Arthritis but have the lasy skin stuff and told I have arthritis in all my joints. Swelling so my rings indent then when not swollen they can fall off. I'm way worse in the morn. I live on morphine, long acting and fast acting. If I don't take gravel with the pain killer it often make me vomit. If I don't take pain killer I vomit from pain. Daily headaches/ migraines and all different types. The whole head or one side or the other or just the crown or just behind the eyes. I take clonazepam for panic attacks rapid unexplained heard beats and a symptom which I say it feels like worms are crawling under my skin sometimes just my legs but sometimes all over. I often say I feel snakes. Clonazepam often helps with the pian too better than more morphine. I take ibruprophen or toradol but I get such bad stomach pain I take rabeprazole 20 mg once a day. Narcosis can cause dry mouth at least for me. My sister had miscarriages due to EDS. She also had pancreitis and never smoked or ever drank. We have had many unexplainable issues. Family history is the why my geneticist diagnoised us with EDS. I have been tested for cold sores twice and it came up neg both times. It started last April and only a week ago could I kiss my husband again. I'm on valacyclovir 500g twice a day for 3 months because. My body can't fight off the cold sores. My lips looked like monster lips when normally they are really thin. I get bad urine infections that turn into bladder infections which thus cause fevers. These I have to take penicillin because the meds you are to take for those kinds of infections I throw up violently. The last time I was on 500mg 3 times a day for 10 days. It was the first time I haven't had to take a second course of antibiotics. There are so many thing associated with EDS that I don't really know where to begin. Some thing though are velvet stretchy skin. Hyper mobility in the joints. Sensitive to sound and light. Sometimes my skin just hurts and hurts so bad that I can't have anyone touch me. Just having a name to my problems helps. When it is cold I hurt way more. I can even notice 1 degree differences by the way I feel. When we go to Hawaii my pain is cut in half. We notice weather changes by getting worse joint pain or migraines.

Your pain is real and I hope they find out what's wrong. I completely feel for you.
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I forgot to address the bowel issue and the sinus issues.

My boys have chronic diarrhea. My oldest is 22 next month but at two years old I had a specialist tell me to trade him in. That would be the only way to get rid of it. They live on anti diarrhea pills.

My son takes nasonex aqueous 50mg spray twice a day for sinus issues. We test neg to allergies but are sensitive to soaps perfumes lotions etc. benedryl and Advil sinus cold and reactine help. My youngest is often on all three at once besides the nose spray.

I have 3 kids and they all have EDS too. My dad, sisters, brother and many relatives have it too so the stories of issues and symptoms are endless.

We have weird scaring sometimes. Daily dislocations but still mobile because of the flexible joints. Wrists elbows shoulders knees hips feet ankles. Sometimes we dislocate in our sleep.

All EDS people are unique and not the same. Some people have EDS and never experience joint pain.
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Do you happen to have breast implants. I ask because you have described my medical nightmare of undiagnosed and misdiagnosis. I have seen probably 30 specialist and have even been to the mayo clinic. Finally after many years of all the symptoms that have been listed and test results listed I got an answer. I just had my saline implants removed and found that one was leaking and was causing my debilitating symptoms. Oh yes I told every specialist I had saline implants and was told over and over they are safe that is not your problem. So I am somewhat guarded but hopeful that some symptoms will at least ease after a vigorous treatment of anti fun gals ,antibiotics,b12injections,steroids etc. So just keeping searching and never give up. I found my answer by watching the discovery health channel monsters inside me. I was to the point of leaving a very good job that I love until I just happened to catch that episode and was on the phone with the featured physician from that episode. I have been ill for the past 6 years. So never give up looking for that one doctor that can do you,!!

good luck

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Do you happen to have breast implants. I ask because you have described my medical nightmare of undiagnosed and misdiagnosis. I have seen probably 30 specialist and have even been to the mayo clinic. Finally after many years of all the symptoms that have been listed and test results listed I got an answer. I just had my saline implants removed and found that one was leaking and was causing my debilitating symptoms. Oh yes I told every specialist I had saline implants and was told over and over they are safe that is not your problem. So I am somewhat guarded but hopeful that some symptoms will at least ease after a vigorous treatment of anti fun gals ,antibiotics,b12injections,steroids etc. So just keeping searching and never give up. I found my answer by watching the discovery health channel monsters inside me. I was to the point of leaving a very good job that I love until I just happened to catch that episode and was on the phone with the featured physician from that episode. I have been ill for the past 6 years. So never give up looking for that one doctor that can diagnose you,!!

good luck

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Has anyone ever mentioned Fibromialgia? I have a lot of your same symptoms, also test negative for Rheumatoid Arthritis, but I have been diagnosed with Fibromialgia. I have also been diagnosed with serum negative Rhuematoid Arthritis. I have taken Enbrel and found some relief. I live on pain MEDS and vitamins. Just practice relaxation stress relief exercises and try to stay very positive. I also forcto myself to stay moving. I have to swear by a great sense of humor that keeps me going. And, most importantly my faith in God. Nothing else works. Keep fighting. 

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Am so sorry to read of all your problems. All of this must indeed be a worry. It's sad to see how much medical jargon is being exchanged and reinforces the ever emerging fact that the doctors seem to cope less and less with all the strange ailments assailing us.

Please do some research into juicing/fasting (See Fat, Sick and Nearly Dead - on DVD), nutritional alternatives for medicinal purposes, Adrenal Fatigue, Thyroid and benefits of Progesterone. Then there's the big one ... the unbelievable and undeniable magnificence of Vitamin C!
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