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Can't Get Diagnosis

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Old 02-15-2006, 10:21 AM   #1
Join Date: Oct 2003
Posts: 3
Sonshine808 HB User
Can't Get Diagnosis

my symptons include:
low grade fever (all the time)
joint pain
muscle aches
partial complex seizures
swollen lymp nodes (under arms, groin, neck, behind knee, inner elbows)
enlarged liver, kidneys and left side of heart
spleen & pancreas pain
high blood pressure
high heart rate
blurred vision
there are a few more but this is my worst

About 7 years ago I started having partial complex seizure out of the blue. Along with some other minor problems. Then 6 years ago was bit by a tick. A month later I was haveing flu-like symptoms. I went to the doctor and he checked me for lymes, but it was neg.
He said I had all the symptoms of the flu, but that I did not have to flu.
He did blood work and everything was fine. My sed rate was a little high.
He said I either had some type of infection, arthritis or cancer.

I hurt so bad I could hardly walk and had to hold on to the walls. My joints, my muscles, everything. The doctor sent me to duke, which was a waste of my time. I was in there 10 mins and he sent me home saying come back in 6 mo. That it wasn't lupus because I did not have a rash.

Well things have just kind of snowballed and I've tried doctors to no avail.
I still don't know what is wrong. What ever it is is effecting my whole system.
I have good days and bad days.

They always do basic blood work and it always turns out fine. It is a mystery!
Does anyone have ideas?

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Old 02-15-2006, 01:20 PM   #2
Join Date: Jan 2006
Location: Valley City, Ohio
Posts: 9
rojo HB User
Re: Can't Get Diagnosis

Have you had a biopsy? That's the way my lupus was discovered. It first started being out in the sun, with a rash. Dermatologist said it looked like lupus, did a biopsy of my head because I was always itching and itching until there were bald spots. They say that 50% of SLE have discoid symptems. Not all lupus people have the rash. But the aches in joints, very painful plus the swollen lymph glands are part of my lupus pain, I also have RRMS so who knows! Have you tried a rhumatologist (sp)? I feel for ya! Good luck!

Old 02-15-2006, 05:14 PM   #3
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Re: Can't Get Diagnosis

Dear sonshine808, hi! Have you read the "sticky posts" at the front of the board? One has the criteria for Dx'ing lupus, and another has criteria for Dx'ing antiphospholipid syndrome, which is a clotting disorder that causes yet another list of possible problems.

Re: your comment that you'd had "basic blood work" done. I'm not sure what all that might encompass, but there are many *specialized* tests used (in part) to Dx lupus & other closely related diseases---meaning tests way beyond the ANA, which doesn't "prove" anything by itself anyway.

Look at the sticky post on "test results" & you'll find a resource that discusses these blood tests, etc. Do any of these ring a bell with you?

Until later, take good care. Vee (Dx'ed with the SCLE "subset" of lupus in 2000, with positive anti-Ro but negative ANA)

Old 02-15-2006, 09:37 PM   #4
Join Date: Oct 2003
Posts: 3
Sonshine808 HB User
Re: Can't Get Diagnosis

Thanks for your replys, I read the sticky notes.

Headache/migraine, memory loss, cold circulation are among the other problems I have. I was on plavix to thin my blood. My left arm would turn cold, purple and get numb. They also thought I was having tia's before they found out it was seizures.

I just had the reg. blood work up done and the doc I saw was a rheumatologists.

Old 02-16-2006, 06:10 AM   #5
Join Date: Mar 2005
Location: london
Posts: 469
zorm HB User
Re: Can't Get Diagnosis

Dear sonshine- my diagnosis took ages and i was very ill. I had to see six rheumatologists the last two gave me the diagnosis. And they were the best The famous Graham hughes the lupus man and his predessessor at St thomas hospital in london. i was diagnosed with sle and sticky blood. but never had positive ana or inflammatory markers. i had excess protein in spinal tap, low lymph count, low vitimain b12, protein in urine, high ige allergy, a pineal cist in my brain, enlarged lymph nodes found on a scan etc etc. everything except the cist pointed at my diagnosis including my physical symptons. but the standard tests have been negative. i was having seizures too which are very scary. Do you have any skin thickening or chnges to your body? cause i have a feeling i have discoid lupus aswell because of this and the nasty scabby rahes on my face. i still have a long way to really feel i am at the bottom of what i have and the treatment starts kicking in. funny you should say you were bit by a tick so was i during getting ill. but lupus people have severe reactions to insect bites anyway so this maybe a possibility. If i were you i would get to see a very good rheumatologist. the american society of rheumaology have a good criteria for diagnosing lupus. You need a doctor that does not just go on tests but your entire history and symptons. Keep all your test results and keep a check on your urine for protein or blood. Go see a good rheumie . I went to the top man in the world and even he thought i was a complicated case. Sometimes its like you don't go to one of his disiples but you have to go to god himself. i appreciate im in england and so thats how i got to see a top rheumie like Graham hughes. But why not do some research on whose the best to see in the states. sometimes you may read a great book by a doc who really understands lupus and you may be able to get an appointment to see him. Good luck and keep in touch. i know how very hard this is.

Zoe x

Dear rojo ,
i was interested in what you were saying about lupus. I was diagnosed with sle and sticky blood after being very ill for a year. however i have this wierd feeling i have discoid lupus too. do you have both types of lupus and how did they treat the discoid? The reason i say this is cause of the horrible skin thickening and lumpy rashes on my face its really chnaged my physical appearance. Id be grateful to know your views.

love zoe x

Old 02-16-2006, 09:20 AM   #6
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goodnightjunebu HB User
Re: Can't Get Diagnosis

Hi, I would get another Drs. opinion esp if he rules out Lupus soley based on the fact that you don't have a rash...that is a foolish and undereducated reply. I would pursue the Lyme disease issue first and foremost, especially considering you history of tick bite and flu. I would encourage you to(though...I am no doctor...If you listen to people who have experienced these issues or have already undergone these things,I find that very often these folks can be almost more helpful than some trained Doctors...which is sad to say...that is why groups like this can be so helpful...a group of similar minds,sharing their insights)find a Lyme specialist or at least an infectious disease specialist. It is often VERY hard to diagnose by test alone. Did you only have the Elisa test or did they do the Western Blot too? If you aren't sure you should find out and research about it.Very often the Elisa is negative and the AMA(American Medical Association) only recommends doing the Western Blot after there are postive Elisa results.Many Drs will only follow the AMA guidelines unless requested to do otherwise. It is now known however that it is common to have a false negative Elisa and later find a postive Western Blot. After explaining this to my physician they agreed and went on to do a Western Blot too(this was in pursuit of my lupus diagnosis, because we were finding a lot of deer ticks on us ) I have a friend who has horrendous symptoms of Lyme which took a long time to track down...but his Doctor is treating him and he is finally responding. He actually recently learned that he has three tick borne diseases. I would not rest until you have a doctor who is willing to listen and investigate until you have a sure answer. The sooner you find out the better recovery chances.Hope this helps and isn't to "know it all "sounding...I just get so mad at Drs who make patients feel like fools and are unwilling to keep looking for makes me wonder why they became Drs in the first place.Junebug

Old 02-16-2006, 10:38 AM   #7
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Re: Can't Get Diagnosis

Hi, Sonshine. I really agree with what Junebug just wrote, to keep trying, that is. In your shoes, I'd also probably try to get copies of recent labwork, just to see what all I'd been tested for. (Or not tested for...)

I just checked my Dr. Wallace hardcover, to see what percent of people Dx'ed with lupus have rashes. His take is that 60% to 70% have "skin problems". He discusses in this chapter rashes, mouth sores, pigmentation changes, hives, welts, vascular rashes, Raynaud's, livedo reticularis, cutaneous vasculitis, purpura & ecchymoses, lupus profundus, & bullous lupus. So it looks to me as though his 60% to 70% guessestimate covers that *entire* list, not just what we think of as rashes.

He also discusses the "lupus band test", which is sometimes performed to confirm a rash as being immune-based----but also is sometimes performed on people with just a positive ANA but not enough else to make clarity possible.

There are a couple of good hardcovers out there, by the way. Dr. Daniel Wallace is one author, and another is Dr. Robert Lahita. Most libraries and bookstores have these books, in the health section.

With best wishes, Vee

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