Discussions By Condition: I cannot get a diagnosis.

Time for round 2!!

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: deedee35
  • June 11, 2008
  • 01:00 AM

My story starts with a dry piece of skin on my left big toe. One night in April I came home from work and picked off a dry piece of skin from the top next to the top of the toenail. I guess in the process I might have lifted the toenail somewhat because I woke up the next morning with a ingrown toenail. I initially tried to be an amuetur surgeon and cut it out myself but the toenail was ingrown almost to the root! Of course, I have neuropathy so I didn't feel pain for while I'm sure.

Sometime in the becoming of May I noticed pus coming out of the side that wasn't infected. I decided to "clean" that side which turned out to be a huge mistake. Within hours my toe was swollen down to the knuckle. The foot was burning so bad and painful that I thought I was going to throw up.

I got into my Pdoc the next day who said he could cut it out, but not until the infection was gone. I was put on keflex 500mg three times a day for 10 days. I went back to my Doctor and he cut the right side of the toenail out. The next day my toe still hurt. I called the doctor and let them know because I knew that this amount of pain wasn't normal. She said to give it another day. The next day it still hurt. I called my Pdoc and told them that it was still infected and I needed an antibiotic. They acted like I was asking for morphine and I got really angry because I actually am a Certified Pharmacy Technician and I know how easy it is to call in an RX. Finally, they called in Omnicef but advised me that I had to see the Pdoc on Saturday. During that time, admist the pain, I noticed more neuropathy much like I've had before. I mentioned this to the Pdoc at the Saturday appt but he didn't seem very concerned. He also told me my toe wasn't infected and to keep it open. I told him I would when I got home. It dried up but it still hurt badly. I finally went to a foot doctor my friend had suggested and he was not too pleased with the lack of work this guy did. the Foot Doctor ended up taking off the whole toenail. A culture sample showed a heavy growth staph infection- this after over two weeks of antbiotics. My c-reactive protien levels were high (not to supposed to have any c-reactive protien) and my RDW count was slightly elevated. Suddenly, a little light bulb went off. Wasn't that sightly high on the last blood test. I knew where I could find it out- from this forum.

http://forums.wrongdiagnosis.com/showthread.php?t=13591

I noticed that the neuropathy is coming after or during a harsh sudden illness to the body and symptoms are the same. Interesting?

There is sadly more to this story. After the foot doc took off the toe he put me on augmentin and referred me to an Infectious Disease Doctor. My ID Doctor put me on another two weeks of Augmentin.

I have been working and feeling poopy on and off. I was very tired but on Friday I worked and I found myself to be more tired than my usually sick tired. I got home and I had a tempature of 99.3. From that night on I've had nothing but problems. I've had a hot face, slight fever on and off, horrible headache- I couldn't even get out of bed or lift my head. Sometime over the weekend I developed a rash on feet, face, and hands.

I debated over if I would go to the Doctor (new Pdoc!!!)on Monday but I woke up to feeling like I was going to vomit and that did it. I went in and the Doctor stated that he thought that I had serum sickness. I had also developed a new problem. I would get neuropathy in my hand so bad that the thumb contracted in to the palm and the thumb would shake back and forth involuntarily. How am I supposed to function with neuropathy like that?

The new Pdoc took me off the Augmentin and told me to call my ID Doctor. I called him and told him what happened. Was very concerned and made me come in today. He saw the rash and said that it wasn't typical of a serum sickness but that it might be. He said he thought it might be a viral infection. He took a huge deal of bloodwork and told me he wanted to have me get my MRI for my foot earlier than what we had scheduled for the following week. He cancelled my appointment for next week and that he would call me when he got all the results. He made a point of letting me know that he would set me up for another appointment but I live awhile from his office (around an hour). I tried to get him to do an ANA but he said that he might get a false positive right now and that might lead us down the wrong path. I have my MRI tommorow and I see my foot Doc tommorow. Right now I am off work. How I can work like this???

So what do you guys think? I know I have/had a staph infection but what about the neuropathy? The ID Doc asked me if I got bit by any insects but you don't always know that. I just find it interesting that I have neuropathy issues like this almost a year apart exactly around, during, or immediately after a sudden illness. I have my own thoughts.. what do you guys think?

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8 Replies:

  • update:went and got an mri/w contrast. My head started hurting again, than the nausea, than the tingling and numbness. I went thru the mri feeling this way. i now know i can not drive.. at all. The rash isn't going away and right now I am typing this with my head slightly off the pillow. I can't sit up or i feel worse. I am so tired. I can't work. I am incapacitated on and off. What is going on?
    deedee35 38 Replies Flag this Response
  • You might end up in the hospital on IVs for about a week or so...those staph infections need a very aggressive treatment.
    Monsterlove 2921 Replies Flag this Response
  • You might end up in the hospital on IVs for about a week or so...those staph infections need a very aggressive treatment. Well, on Thursday morning I went to the ER. ER Doc was acting like a big ***k.. until he did my bloodwork. I intially went because of the rash I have on my arms, feets, and hands. While laying in bed I noticed that my legs were unusually hot. I got up and went into the bathroom. My elbows were hot and bright red.. and so were my knees. First thing I thought was joint inflammation and so I ran into the ER. ER Doctor that the rashes were indicative of serum sickness but he couldn't put me on steriods because my ID Doctor(who I paged by the way first and he didn't call back) took an MRI and if there is a bone infection steriods would make the infection worse. My sed rate was normal- which means I do not have an infection in the blood. The ER Doc didn't do a CRP because that is systemic and he is looking for something emergency- which he found with my potassium levels being 2.8!!! They immediately gave me potassium. gave me an ecg??? and wrote me a rx for klor-con. I have to follow up for another blood test- I am doing that tommorow. Thursday I was incapacitated. Friday I was on and off but accidently took 2 pot pills. Felt better. Called my boss who is a pharmacist( I am a Certified Pharmacy Tech) and she said that it is a theraputic doesage to take 40meq. Very tired still and can't drive because of nueropathy. The rash is still around and I've been off augmentin since last sunday. Activity gives way to extreme exhauston and bouts of headaches and nausea. Skin rash still itches. I can't work like this.
    deedee35 38 Replies Flag this Response
  • DeeDee, Don't stop seeking help. Do whatever it takes to get an answer and the proper treatment. Some ideas: Go to another Emergerncy Room.Call Infectioious Disease doctors yourself.Tell the nurse you are much worse and the Doctor is not listening, ask to see someone else.Get family members and friends to help.Reading your posts I can tell you are in pain and that can make you weak and not strong enough to plead for proper attention, if so get others to help call around. My father had a steph infection for 3 weeks before proper diagnosis and he was in intensive care unit at the hospital for 2 months. Round 3 -find out what is wrong and get proper treatment!!!!!
    Sunday Morning 1 Replies Flag this Response
  • DeeDee, Don't stop seeking help. Do whatever it takes to get an answer and the proper treatment. Some ideas:Go to another Emergerncy Room.Call Infectioious Disease doctors yourself.Tell the nurse you are much worse and the Doctor is not listening, ask to see someone else.Get family members and friends to help.Reading your posts I can tell you are in pain and that can make you weak and not strong enough to plead for proper attention, if so get others to help call around. My father had a steph infection for 3 weeks before proper diagnosis and he was in intensive care unit at the hospital for 2 months. Round 3 -find out what is wrong and get proper treatment!!!!! I guess I am more fustrated than anything else. I have never missed a day of work before this. I called my ID Doc and found out he had not gotten my MRI of my foot yet or all of my blood work- which makes me think they've found something because they gave him pulimary work that is not final....... In the meantime I went back to my new pdoc on sunday who told me to take another week off- so I have to now take an LOA (leave of absence). The Pdoc is testing my renal function- my urine- and for autoimmune- THANK ****s! I get to see him early Friday. I see my foot doc on Thursday- toe is usually numb and the whole foot seems to have a different circulation from the different foot. I feel better somewhat but very VERY tired. I still have the ***n rash and it is primarily on my joints (knees, hands, feet) and I have the one rash above my left eyelid which I have had for weeks and doesn't go away(was the first rash I had). I haven't been taking my adderall but took it today- it definately makes the symptoms worse- which SUCKS because nothing else has worked as good for my inattentive A.D.D.. Do I have a high blood pressure/heart issue now because of all this? Getting the last lab work this morning my forehead started to itch and I got a hive on my forehead. Nothing but fun here.. I really just want resolution. If it is serum sickness I will be able to resolve that eventually. If it is lupus or another autoimmune issue I can hopefully manage it. As a side note I found out that my Aunt had Scleroderma with reynards(sp) as well. I didn't know this when I went into the Doctor yesterday. She actually died from complications of Scleroderma. Wasn't happy about my parents not being more clear on the details.
    deedee35 38 Replies Flag this Response
  • Wow! I Hope You Find Out Whats Really Going On With You. It Does Not Sound Fun At All. May God Be With You And Help You Through All The Things You Have To Do To Find The Answers And Gives You Strenghth To Deal With Everthing.
    SUGARBABY 6 Replies Flag this Response
  • Wow! I Hope You Find Out Whats Really Going On With You. It Does Not Sound Fun At All. May God Be With You And Help You Through All The Things You Have To Do To Find The Answers And Gives You Strenghth To Deal With Everthing. Thank you. I don't mind prayers by any means :D My update now: Spoke to my ID Doc. He told me that I didn't have a bone infection ~~YAY!!!~~ ID Doc was going to leave it at that but he forgets I work (sigh-worked) in Healthcare... I know that MRIs show inflammation and he told me that yes- after over a month of antibiotics that I still have tissue inflammation. He said I was on a strong course of therapy and that it is something that will just have to repair itself after time. He told me he checked parvo and ebv and the infections are old. He has a few to come back but puliminary test results show no other virals. He states that he doesn't think the rash is viral or serum sickness. He states that if the rash doesn't go away by Wednesday that I need a dermotologist. I think I will just wait until Friday and see what my Pdoc finds with the other tests. I also see the foot doc Thursday. My left big toe is red and usually numb. Sometimes the toe and foot gets purplish looking.. I am afraid of losing it because of lack of circulation.
    deedee35 38 Replies Flag this Response
  • So on Friday I went back to the Doctor. He had done testing on me - specifically an ANA, compliment testing an a cbc/bmp and urine sample. The urine sample was cloudy but they didn't know why. They tell me the ANA was negative and that i didn't have Rocky Mountain Spotted Fever, Lyme, or anything else, just Serum Sickness. Doctor states he wanted me to go back to work or I might develop "Chronic Fatigue syndrome". He also told me that 99.1 thru 99.8 aren't really normal and that it is normal for the temp to be that high delay while in bed. I still have rashes but they are turning brown. My eyelid is still discolored from the rash. Looking at other serum sickness rashes I notice mine looks NOTHING like theres and it is on my hands, feet, knees, and elbows. I have developed hives today on my stomach and back. The first thing is that I know what the doctor tested me for and it is not all inclusive. ANA will not nessacarily tell you if you have Lyme- which he told me I didn't. It in fact doesn't REALLY rule out anything. The Doctor told me that my pin print red rash turning brown is normal- I am not sure about that. The Doc is testing my blood sugar(H1AC) and my thyroid. In the meantime I am not going to sit around. I can not let this go. The neuropathy is the worse thing- I am 31 years old and last year and now this year I get this neuropathy......why? Why do I get sick and than get nerve issues? I will see a Neurologist and than depending on his opinion I will see a Rhuematologist or Dermotologist about the rash/rashes. I will not let my body be destroyed because Doctors can't find an easy DX. I just know that I fell last year while I was working with infants. What if I had been carrying one when I fell? What if I break a bone? Dana
    deedee35 38 Replies Flag this Response
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