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Old 01-20-2010, 10:32 AM   #1
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How did you find out

I have not been diagnosed with lupus. I am currently waiting to see the rheumatologist in Feb. when I will hopefully have an answer.
My question is to everyone. When and how where you diagnosed? What were the years like leading up to a final diagnosis? When did symptoms start? Basically, what is your story? I am sure they are similar to my long journey through "what the crap is going on with me". I am hoping that hearing what others have been through will help me understand and deal with what is going on.

 
Old 01-20-2010, 03:38 PM   #2
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Re: How did you find out

johnstonx5, hi! Welcome! First I want to point out the "sticky posts" (permanent info with icons that look like lists with thumbtacks) at the top of the thread list. They have valuable info on tests, the standard diagnostic criteria, tests, plus a fascinating list called "alternative criteria".

Honestly, I bet there are almost as many presentations as there are patients! That's a little jokey, but not much! That said, here's what I had, for what it's worth... As a small child, high fevers & convulsions when on sulfa antibiotics, dx'ed as encephalitis. Age 4-6, multiple bouts of pneumonia. Age 10, widespread watery, blistery rashes. Age 13, hospitalized with nonstop periods, fatigue, joint & shin pain, fever, decreased white blood count, elevated sed rate. Mid-20's, beginning of chronic GI problems; also weight loss, hair loss. Mid-30's, urinary problems & migraines. Mid-30's, hospitalized for severe gastroenteritis. Late 30's, early form of a lupus rash (but no one knew it was a lupus rash) on arms/back/torso, which took nearly 4 years to reach "mature" form (big red rings that didn't itch, scar or depigment). Early 40's, neuro-like tingling, dropping things, falling down, chest pain, breathing problems, anemia.

I saw gastroenterologists, GYN's, urologists, dermatologists, etc. for years. My rashes were the last problem to appear; and I had those biopsied immediately but got no answers. Then I realized SUN was probably causing the rashes & discussed with all my local drs. Yet STILL no answers. After one terrible appt. with a local rheumie, I said ENOUGH ALREADY, and took myself to a metro rheumie. He retested & sent me to a dermatopathologist for one last skin biopsy. Got answer in less than one month, AFTER ALL THOSE YEARS: Ro-lupus, which is very rare (ANA remained negative).

I've taken Plaquenil since & must avoid sun. Both have helped a lot, but I still get tired & hurt. BTW, with all the above over years, I'm still considered SUBACUTE, as I've not have major organ involvement.

And how about YOU? What have you experienced, with whom have you consulted, and what's the thinking been so far? I hope you keep posting here. While we're only patients, the posts can help you develop good questions for your own drs! I'll say BYE for now. Warm wishes, sincerely, Vee

 
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Old 01-22-2010, 07:28 AM   #3
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Re: How did you find out

I am so confused about what is going on right now. It takes so long to get answers and I feel like I am going to go insane before we find something and I am able to start a treatment plan.
I was always very healthy as a child. I very active and energetic. I was a little hard headed and difficult for my parents to deal with a lot of the time but I can't remember ever being depressed.
(i'll try to make a long story short)
After the birth of my 3rd child I began to feel exhausted all of the time. I have been a stay at home mom. My once spotless home was being neglected, I stayed angry at my husband and I would feel angry if anyone asked me to do anything for them. I was so tired all of the time. I rationalized my mood with having a child w/ rsv and only getting about 4hrs of sleep in a 24hr period.

However, a year later nothing had changed. I started going to doctors and explaining what was happening. I told them I was tired all of the time and it was making me depressed. They would give me anti-depressants. I soon found out I can't take them. All anit-depressants cause my legs to have a burning sensation.
Things just seem to get worse and worse with the fatigue. It has almost cause my marriage to fail and I have received letters from my older children's schools telling me they were in danger of flunking because of missed days. My middle child's school actually sent a letter telling me I would be visited by the local sheriff dept. (i called and spoke to the school, i never rcvd a visit). I had also dropped out of nursing school.
I was so sick of drs. trying to put me on anti-depressants. I was depressed because I was tired. I was not tired because I was depressed. I have even been diagnosed as being bi-polar.
Finally almost 4 yrs later a was visiting a P.A and told him what was going on. By this time I was having abdominal pain a lot. He looked back on my records and asked if I had a sore throat a lot. (I guess I had but nothing worth complaining about).
He had my blood drawn and ended up being tested for Chronic Epstein Barr Virus. I tested off the chart. Then I was told there was no cure and nothing we could do.
Over the next few weeks I began to have severe neuropathy. Fingers and toes would turn blue, I had sharp pains in my abdomen and left chest. my throat hurts all of the time. And I hurt under my arms in the lymph nodes. I have severe ringing in my ears and my head and neck feels like it pressures up and is going to explode. My lips tingle. Sometimes they will pulsate and burn then I end up with blisters on them. I feel electric shock in my hands. And I have lost some vision in my left eye. I also feel pain behind it. My right arm and shoulder hurt constantly. It feels like a tourniquet has been left on it. My hands will swell. My right calf has swollen up before.
I now get a red sunburn like rash on my neck, shoulders, trunk, legs and face. I also get these weird circular light discolorations. A few days ago for the first time I noticed the rash on my face come up when I was outside. They never last very long 6 hrs tops. Oh, and one of the first things to happen. My legs and arms will feel painful and fatigued after very short use like walking across the house or washing my hair. I have to stop and rest for a few min before I can continue.
I am sure there is more but that is all I can think of right now.
I had an ANA done. It came back pos 1:8. I have now been referred to a rheumatologist, but my apt is not until Feb 18.
In the meantime I have been given Adderall to fight the fatigue. It works sometimes. If i feel real bad it does nothing. It will atleast keep my eyes open to watch the kids but my body stays so tired I can barely move.
I am so afraid of getting to the specialist just to be told they don't know what it is and be left with no answers or treatment.

 
Old 01-22-2010, 08:47 AM   #4
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Re: How did you find out

First, let me say "do not get discouraged". It took me a good 10 years of complaints to finally get someone to hear me out. Second, if you have not done so previously, write down every symptom, changes in symptoms, no matter how insignificant you may feel they are. Take this list with you to your first appointment and take along any medication trials you have had as well as copies of your previous tests. The more armed you are with information, the better equipped you will be to be taken seriously.

Now take a deep breath, and prepare yourself that you may have to see more than one Rheumatologist, just as you may have to try on several sizes of clothing in shopping before finding the perfect fit. I saw the third Rheumatologist before getting a definitive diagnosis of Lupus. I was initially diagnosed with Fibromyalgia (which I also have) and was tried on an array of tranquilizers and antidepressants which actually made me worse. It is not uncommon for those with Fibromyalgia and other autoimmune disorders to have medication sensitivities.

I also want to point out the sticky posts mentioned in the last post as there is a wonderful link in the lab test posting that details the difficulty in getting a Lupus diagnosis as Fibromylagia and Lupus have so many overlapping symptoms. It also states that 25% of Lupus patients also have Fibromyalgia, making treatment difficult if not adequately assessed for both illnesses.

I know that once I began Lupus treatment, my fibromyalgia symptoms have taken a back seat. I know that a thorough lab testing, xrays, and other diagnostic criteria is critical in an accurate assessment. If the Rheumatologist you are seeing does not follow up with lab studies, I would find one who will.

Just as with any illness, diagnosing Lupus is by way of eliminating other illnesses, and by means of lab studies that indicate a likelihood of Lupus. Do not be discouraged. If you read, especially about the coexistence of Fibromyalgia and Lupus, you will see that their treatments are different, and that either can be brought on by some significant stressor in one's life such as a previous illness (viral,etc) or an insult to one's body (whiplash or back injury, etc) or previous exposure to certain medications. By all means follow through with whatever recommendations your Rheumatologist makes, whether it be seeing other specialists, or having other evaluations.

I know this sounds like a long drawn out process, but I am so much better having been through the experience and finally receiving proper medical treatment. I personally have had much better response from Lupus treatment than any I received for Fibromyalgia. Also I do want to stress that sleep is important in reducing stress to one's body. Trying to keep an active schedule that is manageable and giving yourself some down time is so importnat to maintain a healthy balance. With lifestyle changes, one can make Lupus a manageable illness.

I do hope these comments help put you at ease. I know that information is power. Try to arm yourself withas much info as possible. I do hope your Rheumatologist is thorough and to your satisfaction. If you have any questions, just ask, there are a lot of knowledgeable people here on this board. Good luck to you in your search for answers.

 
Old 01-22-2010, 10:18 AM   #5
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Re: How did you find out

johnstonx5, can you describe your "weird circular light discolorations"? I'm curious because my skin lesions were "annular" (circular), with red rims & clear centers. At first, each looked like a plump mosquito bite (but didn't itch), then expanded outward forming a perfect ring. As the lesions faded, they expanded outward even more & lost perfect circularity.

Rashes can be useful because they may be biopsied & examined under a microscope. Further, immune stain tests can be applied to the biopsy samples, which can "light up" in a unique way if a rash is indeed a lupus rash. There's a variety of lupus rashes possible. Proving someone has a lupus rash means that person has lupus TO SOME DEGREE. By that I mean lupus involvement ranges widely, from skin-only to full-blown systemic.

Like you, I also had an Epstein-Barre level that was off the map. I also got grossly fatigued doing small tasks, like drying my hair.

I hope your Feb. appt. is a turning point for you. If you do have something rheumatological going on, please know that most people indeed do better, once they have a correct diagnosis & treatment. Stay in touch with us, OK? We'll be here for you. All my best, Vee

 
Old 01-22-2010, 01:19 PM   #6
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Re: How did you find out

Vee,
The discolorations are odd. They seem to be coming from underneath my skin but never surface they are a light purple/blue color. I also get some sort of mottling and I wonder if it is part of that.
It is actually a partly sunny day outside and I am curious if I will develop a rash on my face if I go outside. I think I will go here in a bit just to see. I am afraid at this point I will be happy with almost any diagnosis just to begin treatment.

 
Old 01-22-2010, 05:49 PM   #7
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Re: How did you find out

Hi, again. Of course I'm just a PATIENT. That said, I think there are skin discolorations under the skin surface common in lupus. One is "purpura" (looks like bruises but aren't); another is "petechaie" (looks like red/purple dots). Only a dr. could say what these are, but you could take snapshots, to take to your appt., especially if your skin discoloratons come & go.

Also, after sun exposure, I used to get a mottled, lacelike red pattern under the skin. This may have been "livedo reticularis", a vascular disregulation. But again, only a real dr. could confirm.

Please know that ALL of us here can appreciate the huge effort it takes to track things down, and know that we're rooting for you! Keep posting, OK? EVER ONWARD! With hugs & encouragement, Vee

Last edited by VeeJ; 01-23-2010 at 04:01 AM. Reason: correct spelling (livedo reticularis)

 
Old 01-22-2010, 06:48 PM   #8
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Re: How did you find out

Well, I went outside for just a few minutes and came back in. I am too impatient to sit outside for too long. I was only out there for around 10min.
I have developed a light rash underneath my bottom lip that itches. It looks more like some kind of allergy to something.
I do have petechaie. However it is not in groups and is few very random singular dots throughout my body.
The discolorations sound a lot like purpura. I have gotten them on my back and cheek also.
I am definitely keeping a list of symptoms.
I am so ready to get my life back. I have fought the fatigue for years. I tried to combat it with exercise and diet. Until Oct I was in the gym 3-4x a week. I ran, did HIIT, plyometrics and lifted heavy weight. My body fat measured at 17%. I had been an athlete all of my life. Played JUCO softball (on scholarship), ran track, played tennis. Then at 31 i was in better shape than I was at 18.
I have gained 10lbs and I am loosing my muscle tone.
I want to get back into shape and back into school. I was working towards my nursing degree and wanted to get my CRNA.
I'll quit whining.... thank you so much for all your help!

 
Old 01-23-2010, 05:11 AM   #9
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Re: How did you find out

Good morning. Did you read those sticky posts, and/or go to the library?

Reading helped me understand how I'd gone so wrong. Had I been smarter earlier, I'd have looked for better doctors sooner. Here are several ways by which I could have assessed my early drs, had I known more!

1. A huge array of problems are possible. My longest-lasting problems were GI & urinary, which my local drs. deemed "stress". Turns out both are quite common in lupus. If a dr. says a problem isn't possible, try to double-check.

2. Drs. don't always do full bloodwork or repeat it at optimal times. Because your blood results can wax/wane as you flare/recede, repeat testing may be required. And some drs. run only ANA, instead of doing full autoantibody tests simultaneously. Ask for lab results & create your own file.

3. There are maybe a dozen lupus rashes in addition to the two best-known (malar & discoid). But there are OTHER skin problems that are seen more often in lupus patients than in the general population. "Solar urticara" (or something like it) may be one of those? Dunno. You could ask.

4. Drs. aren't created equal. My last skin tests were done by a specialty I'd never heard of: dermatopathologist = a dermatologist who does his own pathology (labwork). Right off, he made one elegant, concise statement that summarized my whole messy experience: that he suspected "a subset of a subset". (By that he meant Ro-lupus, ANA-negative, which is rare). His words made me realize that while these conditions have "classic" presentations, VARIANTS are quite possible. So if you don't get a warm & fuzzy feeling, ramp up---maybe to a big practice in a big city, where lots of variations are more likely.

When I saw my final two specialists, I had two fallbacks in mind, in case "Plan A" failed, so I went in with confidence, for a change. Main thing is, don't be frightened. Assure yourself that SOMEONE will figure you out. There are great drs. out there; we just have to find them! Hang tough! Vee

 
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