[mdusha]

Hi. My name is Michelle and I'm 38 years old. I was recently placed in the hospital for five days and diagnosed as having mono, active epstein-barr, a strep infection and an 'auto-immune disorder/response.' All of that diagnosis was done by an infectious disease doc in the hospital. The doc I saw prior to hospitalization had no clue what I had and was the one who said I needed to go to the hospital. Upon release, I was finally able to see my regular doc who now says he doesn't think I had mono at all and upon knowing my history and seeing the current problems, believes I have lupus. I am scheduled for a battery of blood tests this coming week and a ct scan (also trying to rule out lymphoma.)

If I may, here is the history. I know no one can diagnose, but I'm curious as to your thoughts. I'm thinking there is a strong chance it's lupus, but I'm hoping not.

Several months ago, I got a round target like rash on my upper thigh. Soon, there were a few smaller ones just like it joining it. The rash lasted quite some time, but eventually left (a cream the doc gave me). Now, there are some discolored patches on my skin where the rash was.

For about 4 months, I've been nauseous in the mornings and struggling with some headaches. No big deal...I ignored it.

First weekend in November, I had a target like rash on my upper arm. A week later, a few smaller ones just like it joined it. A week from that, I woke up one morning to find those rashes all over my back and chest...and red dots and rashes all over my trunk. The target rashes were scaly around the edges. Again, I ignored it and figured it would go away.

Went out of state and begin having vertigo with nausea. Was treated at a walk in ( I knew what I needed, Meclizine and Pfenergen (sp?) b/c I was diagnosed with vertigo a few years ago and have intermittent episodes) clinic and given the meds to help.

Came home and became very ill. Fever, chills, horrible joint pains (have had joint problems for years) a terrible terrible headache that would not respond to very strong prescription pain meds, sweats,fatigue, sensitivity to light (had to have the lights out) nausea, throwing up and feeling horrible. One doc said it looked like Malaria lol. Anyway, ended up in the hospital and was very sick. I was admitted with a fever of 103.5. I had horrible sweats that soaked the sheets so frequently, they had to keep changing them.

I was released with a medrol pack and the diagnosis I mentioned in the beginning.

I still do not feel well. The major stuff is gone (no high fever), but I still feel horrible. I have joint pain, headache (although not as bad as before) my belly hurts on my right side, I have great difficulty concentrating and focusing on anything, still nauseous (although not as bad) and dizzy some and now I have mouth ulcers.

BTW, for months, I was having night sweats and ignored them as well. I also have diabetes (type 2).

I feel like a baby. I feel like a hypochondriac b/c I have all these little symptoms that add up to me feeling horrible. I feel like I'm letting down everyone in my life. I'm getting depressed and am crying a lot it seems.

I'm normally a 'pull myself up by the bootstraps' kind of person. Suck it up and move on...but this has knocked me on my butt.

I'd really appreciate any thoughts. OH..and in the hospital, they said my sed rate was 'sky high.'

Thanks for getting thru this post, I know it's long.

Thank you in advance for any thoughts. I'm really feeling lonely, scared and confused.

Michelle

 

[mdusha]

One more thing....

My body does not seem able to regulate its temperature. I mean, I can be cold and hot at the same time it seems! Wierd, I know. And for years, my fingernails turn PURPLE when I'm cold. Everyone who knows me well has seen it and thinks it's the strangest thing. At the doc the other day, when he was checking my legs, he commented that my feet were ice cold. Jep, but I showed him where I was sweating on my forehead. Bizarre.

Michelle

 

[sam101360]

Welcome to the site! You have found the right place for advice and support, as much as we can give of both.

I would strongly recommend seeing a dermatologist and having them do a biopsy of your rash. Its just a simple punch and it doesn't hurt a bit. It was how I acquired my initial diagnosis, as my blood tests were mostly within normal range.

I wish you luck in your journey to a diagnosis, and hope you keep us updated.

Just remember, if it is lupus, they have come a long way in treating it and we can live long and fruitful lives. Many of the people who post on the board are more representative of the worst case scenarios, as those who are living normal lives are out there doing that and not here.

Good Luck - and again, welcome.

Stephanie

 

[Maia]

I would make sure that Lyme and other similar tick-borne illnesses have been investigated appropriately and ruled out. Lyme presents with such a target rash and has many of the symptoms you mention, almost fits to a tee with most of them actually, and the timeline fits Lyme too with more severe joint pain hitting a number of months after the initial rash.

I would also recommend getting a copy of all blood tests since you became more severely ill... this will help you know what has been run, what has and has & has not been abnormal, and key you into if any things have been missed. It sounds like the ANA test was run, and was abnormal. Just so you know... the ANA will often become abnormal in response to some infections and even after some vaccinations. In people without autoimmune disease, it does not go very high, and goes back down to normal/low levels after recovery. But if symptoms continue, and the ANA remains high, then autoimmune disease becomes more likely.

I hope if they believe something autoimmune is going on that you have been given a referral to a rheumy or were seen by one in the hospital. You need follow up with a rheumatologist who will diagnose, determine treatment and monitor your situation carefully. If lupus is being considered, it is very important that you have urinalysis performed as well as a number of blood tests (which you can read about on this website). Sounds like this is your upcoming visit to the doctor where you mention more blood tests will be run.

As already suggested, a biopsy of the skin (both affected and unaffected areas) will show characteristic changes if it is due to lupus. Many have been diagnosed solely due to skin biopsy results if bloodwork is absent or inconclusive.

The high sed rate can be caused by many things... infection could have caused that all by itself for instance.

Clearly you need more answers. I hope you get them soon, and get back on your feet again. It sounds like you've been through the mill, and I'm very glad your doctors are considering autoimmune disease as a possibility. Just make sure they rule out other possibly causes too that are more curable (like Lyme).

 

[mdusha]

Thanks

Thank you both for your insight.

I have not yet been referred to a rheumatologist as I'm still just seeing my PCP and the Infectious Disease doc.

Lyme disease was mentioned in the ER initially, but as I live in Florida, they felt it highly unlikely.

I do hope to get all of my bloodwork records. I'm assuming that they would have done the ANA in order for them to say an 'auto-immune' response...but I don't know and am just guessing.

I do feel like I've been thru the mill, although I know others have it much much worse. I guess that's why I feel like such a baby for not being strong enough to handle this...to just pick myself up and move on and ignore it all.

Each day brings something new it seems; like waking up today to find sores in my mouth. I've had those for some time, on and off again, and never thought much of it...just an annoyance. Now though, it seems they may have new meaning.

Anyway, sorry for venting so much. I will take your advice.

Thanks again for being patient and offering suggestions...I really appreciate it.

Michelle
(and I'm in Florida too....Orlando!)

 

[clairebear!!]

hey michelle, i'm claire from manchester!
iv just read ur msg about drs thinkin u maybe have lupus..
im only 18 and i was diagnosed with lupus nephritis in october, which is lupus in the kidneys and iv been told its an aggressive form.
i had a reali quick diagnosis even tho it did take 9 months! alot of your symptoms are different from mine, but there are a few that are the same. when i was 17 i started getting really bad pains in the muscles in my legs...then the pain went into my knees.. it got that bad that some days i couldnt even bend my legs! as time went on it spread to most of my joints including my elbows, ankles, wrists, fingers and shoulders, i was back and forward to the drs and in the end i got told it was all in my head! which obviously upset me cos i knew for a fact it wasnt in my head at all!
sometimes the pain was tht bad that i was actually being sick!
i then got swelling in my hands and fingers and i couldnt grip anything, i couldnt even open a bottle of water! or straighten my own hair! as time went on the swelling started appearing in more places but the worst was my ankles, i had ankles like an 80 yr old!! so i was taken to the walk in centre where they did a urine test and it showed that i had maximum levels of protein so i was admitted straight to oldham hospital..where i stayed for 2 days then i was transferred to hope hospital in manchester as they are more specialised in kidney diseases. there, i had alot of blood tests and a kidney biopsy which showed i had an aggressive form of lupus nephritis. i stayed there for a week while they put me on many tablets, its now 3 months on and i feel great in myself, i have no muscle or joint pains, or no ankle swelling, im on 27 tablets a day which is a nitemare, but theyre workin!! the most important tablets im on at the minute are steriods and MMF (cellcept) im now only on 2 steroids a day, but when i was discharged from hospital i was on 12 steriods a day so iv come along way since then!
lupus is a reali scary illness as it can b so serious especially if it gets into your major organs like your kidneys!
i hope it isnt lupus that you've got, but if you ever need to talk to anyone feel free to send me a msg, i kno im alot younger than most people on here but iv been thru it all! so if u ever need to talk to anyone about anything, im here!
hope you're feeling alrite!! keep smiling!
claire x

 

[Maia]

A lot of doctors think tick borne illness is unlikely based on location, but they're often mistaken. Personally, in your shoes, I would insist on ruling it out before accepting an autoimmune diagnosis. In Florida, there are a number of tick borne infections possible. Here is a link of the most common one...

http://epi.ufl.edu/human/tick.shtml

Good luck - hope you get sorted out soon.