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Posted 8/26/2008 4:49 AM (GMT 0)
Hi, I'm new here. I have a list of symptoms about a mile long and no doctor seems to understand. It's almost as if they aren't really listening to me. I'm even begining to think maybe I'm just crazy. Whenever I try to research my symptoms online, Lupus is the thing that almost always comes up. I don't want to have it, but I fear that I do and that I will wait another eternity for a diagnosis and some help. I've been through ten-zillion blood tests and several hospital outpatient proceedures where they've been poking around and keep finding nothing. I believe that whatever I have began about 12 to 15 years ago.

Where did most of you go to get your diagnosis? A rheumatologist?

My doc did an ANA test on me and said I came back with "39." What does that mean? She said it was a "normal" number, but taken with my other symptoms I'd think it would be something to look at more closely.

List of symptoms (in case you have lots and lots of reading time on your hands)

Most often, I have some of these symptoms in cycles with some overlapping and then I cycle to another set. Right now I have ALL of them going strong at the same time:

Inflammation in left eyeball with grit and fiber coming out

Burning tongue with red and/or white patches and sometimes swelling and cuts that come from nowhere (it's gross)

Calves that become rock hard and crampy

Constant muscle pulls and sprains from little or even no movement

Chronic back, shoulder, hip, neck pain

Chronic fatigue

RLS

Unrefreshing sleep, and sometimes insomnia and trouble falling asleep in the first place

Abdominal pain - especially on the upper right side

Digestive problems

Frequent Nausea and sometimes vomiting

Dizziness/vertigo

Chronic sinus infections and sore throat

Migraines

Inflammation of groin area

Sciatica

Night sweats

Tremors

Panic attacks

Swollen legs, feet, hands

Intolerant of cold

Brain fog

General joint and muscle aches and pains that jump around

Body temp always "off"

I could still go on and on...

I didn't come here to whine, but I'm confused and I don't know what to do next. Basically my GP told me to "wait until it gets bad enough" for him to figure it all out. I assume that when I'm dead he'll have an inkling, maybe.

Posted 8/26/2008 2:03 PM (GMT 0)
Hi dirtyflowergirl, and welcome to the forum. I'm so sorry you're going through so much right now. I went through a long list of symptoms for about 20 years before I got a diagnosis of lupus and it was so frustrating to be treated like a lunatic. I hope you don't have lupus, as I know you do too.

There are a couple of things I would do right now, and I'm surprised that your doctor didn't suggest them.

First I'd run straight to an ophthalmologist to have your eye checked out. You might have conjunctivitis which is easily treatable with steroid eye drops but which should not go untreated. Or it could be something else. I'd never let my eyes go untreated and an eye specialist is the person to see.

Second, with RLS, chronic fatigue, brain fog, and restless sleep, if your insurance is good, you might consider having a sleep study. I had all four as well and as soon as I was prescribed Neurontin (and other drugs work as well) my restless legs settled down, I started sleeping better, I was refreshed in the morning, the chronic fatigue subsided, I felt better overall, and my hubby was so happy that I didn't wiggle my legs all night. It's also possible that you have sleep apnea in which case you might need a cpap. I still have brain fog which is a symptom of lupus.

It's possible to have lupus and other problems as well and if you can at least check off some of your symptoms you'll a) feel a little better, and b) show your doctor that you're working with her towards a solution.

We don't consider "whining" a negative on this forum. In fact it's encouraged. We don't have do's or don'ts in terms of our illnesses. We whine, cry, scream, complain, vent, ask questions, answer questions, and support each other. I will tell you that the diagnosis limbo you're in, and the waiting is so hard. We've all been there so you're in the right place to whine, vent, and ask questions. Bring it on!

(((((Hugs)))))

Pat
Posted 8/26/2008 10:46 PM (GMT 0)

Thank you so much, Pat. I appreciate you taking the time to reply to my post more than I can say. Thanks again.

xoxo!

Posted 8/26/2008 11:04 PM (GMT 0)
Hi Flowergirl, Wow sounds like you got a bunch of stuff going on. Unfortunately this disease overlaps with a lot of other autoimmune diseases which makes it even harder to diagnose. Has your doctor set you up with a rheumy? I don't know about insurance if you can get one with a doctor referal or not. If not I would suggest seeing a different doctor who will send you to one. It sounds like Patty gave you some great advice.

As the ANA all labs are different but I have no idea what 39 would mean. Most of them I've seen are like 1:40 1:80 1:160 and so on. Another thing is that an ANA is not by itself a diagnosis. Some people with Lupus never have a possitive ana others that don't have lupus have a possitive ANA. There is no one test that will say yes or no. sad I wish there was. I've been coming to this group for 2 years and don't know any more than when I started. Well I have a load of imformation but the doctors all come up with different answers. confused   I hope you pcp is at least treating your symptoms. You could at least be on plaquenil. It's one of the safest drugs they could at least try. If you aren't getting help please see a new doctor.

It's good to have you here.

gentle hugs

carol

Posted 8/26/2008 11:40 PM (GMT 0)
Hi Flowergirl,

 

We definitely understand the frustration you have.  You're in a good place here!

 

Your list of symptoms also sound a lot like Fibromyalgia.  Lupus and Fibro mimick each other a lot. If you are repeatedly getting normal blood work back, it might be fibro and not Lupus.  Although, I have both and my labs are normal too.  So it's a bit of a crap shoot.  All of the symptoms you listed (below) are very common in Fibromyalgia.  You might want to check in with the folks in the fibro forum too.  See what they think. I wish you a quick diagnosis.  It's not nice living with these symptoms.  Keep us posted!

 

Ginny

 

Dizziness/vertigo

Calves that become rock hard and crampy

Constant muscle pulls and sprains from little or even no movement

Chronic back, shoulder, hip, neck pain

Chronic fatigue

RLS

Unrefreshing sleep, and sometimes insomnia and trouble falling asleep in the first place

Sciatica

Night sweats

Tremors

Panic attacks

Brain fog

General joint and muscle aches and pains that jump around

Body temp always "off"

Posted 8/27/2008 12:57 AM (GMT 0)
Hi Flowergirl, welcome. I am sorry you are having unexplained symptoms but you have come to the right place. Feel free to whine, vent, cry, etc... we all do it. If we didn't have this place to lean on I think we would all be nuts, or at least I know I would.

Unfortunately lupus is a disease of 1000 faces, as Ginny said it mimiks other diseases' and is very hard for doctors to dx (especially if they are not up to date on lupus). There is not one single blood test for lupus, it's a host of them along with ruling out other things. You may have to change rheumy's multiple times before finding the right one, the one that listens to you and treats your symptoms even though your labs are negative. It can get very frustrating, be sure to keep all of your doctor appts, give the doctor your list of symptoms, even things that happened when you were a kid. Try to get as much information on AI diseases' in your family history.

You are going to have to take control of your health and keep searching for the right doctor, I finally found mine after 2 others dismissed most of my symptoms. The last one was the worst, he actually said to me "maybe by the time you are 90 your blood work will catch up with your symptoms" mad nono needless to say I left his office in tears and moved on to the next doctor. Hang in there as it does take time for the doctors to piece things together like a puzzle.

Take care and keep us posted on how you are doing. :-)
Posted 8/27/2008 3:20 PM (GMT 0)
Thank you so much Carol, Ginny, and Stacie, for your kind words. It makes me feel a lot better to be able to speak with others who are going through similar issues and know a little more about it all.

I'm going to contact my insurance company today and see what I have to do to see a rheumatologist. I assume my GP will have to refer me also.

Thank you all so much for taking the time to respond to my post. It makes me feel so much better to know that I can get some support here. I wish you all happiness and wellness!

xoxoxoxo!!!
Posted 8/29/2008 3:07 PM (GMT 0)
Dirtyflowergirl, how are you doing? It will probably take a while before you get an answer from your insurance company but don't stay away from the forum. We all learn a lot by interacting with each other and from your list of symptoms, it's obvious that you need lots of support. Let us know how you're doing.

Pat
Posted 8/29/2008 6:32 PM (GMT 0)
Hi Flowergirl:

I just wanted to say hello and welcome to the forum. We totally understand how you're feeling I've had lupus for 20 years but it took my doctor 13 yrs before he "officially" DX'd me with lupus and started treating me. It's highly frustrating while we hurt and feel terrible, as our doctors take their time shuffling us around from doctor to doctor.

I also wanted to pass on that it's very okay to come here and vent. We all need a chance to talk about how we truly feel and what our bodies are doing. I have to admit I come and vent often. I've had fibro since 1995 then in 2001 I got the DX of lupus, then a year ago I found out that I've gotten MDS, which is a blood cancer like leukemia, and I'm going to need a bone marrow transplant. Then to top it off I found out 6 months ago I've got RA. I'm so angry that I've got all this. I'm very upset that I took a medication Cytoxan to treat my lupus and I was unlucky and ended up with cancer. This is the only place that I can come and say how I really feel about things. I can't talk to my family about it. So the people here are wonderful and they are the most loving bunch here. So please NEVER feel that your whining and complaining to much. We have a wonderful family here and they are a great support network.

Welcome to the forum and I'm sorry that you're dealing with so much. If there's anything at all that I can do to help, please just give a hollar and I'll be there for you. I hope things begin to improve for you and I'll keep you in my prayers.

Hugs,
Barbara
Posted 8/31/2008 2:06 PM (GMT 0)

I welcome you too flowergirl.  I am new also, so mostly read the posts made by others.  I too feel as if I have found a place with wonderful people who have helped me a lot.  Hope that you will soon be able to find a doctor who will pay attention to the symptoms. 

Hester

Posted 9/5/2008 4:00 AM (GMT 0)

Pat: Thanks for checking on me. I'm still struggling and have just gotten the ok from my insurance to see a rheumatologist/internist. Now waiting for them to call me back with the appointment and such. The waiting is so hard, but I'm really trying to think positively.

Barbara: I'm so terribly sorry to hear about all your health problems. That's too much for a person to handle, but I'm sure you'll find the strength to get through it all. I almost want to cry out of sympathy for everyone here who is going through so much pain, and also cry out of joy that I've found someplace to talk about it all without feeling like a crazy person.

Serina: Thanks for your reply. I wish you, and everyone else here, the best of health and happiness.

xoxoxoxox!!!

DirtyFlowerGirl,

Posted 9/6/2008 5:22 PM (GMT 0)
Hi FlowerGirl, Welcome to the forum. Hang in there!! It really can take a very l-o-n-g time to get things figured out. Is your next appointment with a rheumy? Be very prepared for that office visit. They ask tons of questions and the appointment may last more than hour. I suggest bringing copies any recent bloodwork, results of any recent tests like x-rays etc. A typed list with your other doctors' names, address and phone numbers. A list of rx meds and then otc meds you are taking, a list of allergies. Have this ready to hand him so you don't have to waste time going over it. They can just take it and add it to their file. Make sure you don't wear ANY makeup to the appointment. You should be freshly showered, but no conditioner in your hair and no body lotion. You want the doctor to be able to see the condition of your hair and skin. It can give medical clues. Even the color your lips is helpful. I know its hard to walk out of the house w/o makeup . . . but it 'can' be beneficial. If you get any mouth sores or rashes before the appointment . . . take a picture and bring that with you. There are some links at the end of my signature that might be helpful too. I hope you'll keep us posted!! Blessings!
Posted 9/15/2008 6:39 AM (GMT 0)
Thanks so much, Rosie! My appointment is Monday morning (today) with a rheumy. I have sent over bloodwork, but I didn't think about going without makeup and conditioner or lotion. I'm so excited to be taking this next step. It took some work to get my doc to give me a referral.

I'll keep you all posted, and thanks again for all of your kind words and support!

xoxoxox

Posted 9/15/2008 11:44 AM (GMT 0)
Will be thinking about you. . . and watching for your update. Blessings!
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