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Old 03-13-2006, 08:44 AM   #1
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armslee HB User
Arrow Lurker with Questions

Hi all
My quick bio:
Had chronic uti's since I was 2. Dx with L kidney damage (yet it somehow still functions) from repeated infections at age 21, severe migraines began during pregancy when I was 25, joint pain begins around age 28. The pain, UTI's and migraines intermittantly flare at times getting worse.
I am now age 32 and 3 months ago began experiencing dizziness, numbness, tingling, cognitive memory problems, tremors and severe migraines and tension headaches and joint pain.

The tremors have now subsided unless I am very upset or anxious. The headaches are more manageable through Topamax and Fioricet. However the joint pain and numbness have gotten worse. I also have had rashes that began appearing in December that I thought was a reaction to antibiotics. I had had similar reactions to Penicillen and Sulfa in years past, but the rashes have now increased to appearing as large hive like patches on my arms, shoulders, face and back when I bath or get hot. I have never sunburned very easily, but fried like a crispy critter over the weekend at my child's soccer game. There are also times that my arms, legs and torso just break out in prickly rash and itch like crazy for no apparent reason.

I have a doctor appt with my MD on Thursday and with my Neuro on Wed. My neuro has dismissed all my skin symptoms and has pretty much refused to do bloodwork. I have had a Brain and C Spine MRI come back normal. She has scheduled me for a lumbar puncture at the end of the month. However, I am believing less and less that my symptoms are MS.

I had my husband take photographs of my shoulders yesterday for me to take with me to my appts this week. It seems as if my neuro doesn't believe in all my symptoms.

Would anyone please give me some advice as to what I should ask my MD on Thursday? I am going to ask him to run bloodwork with ANA and also the syphillis titer.
Any suggestions would be greatly appreciated by this limboer!!!!
THANKS!

 
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Old 03-13-2006, 09:31 AM   #2
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Burnt Bees HB User
Re: Lurker with Questions

Hello,

I have read that merely running an ANA blood test for lupus may not be enough because certain types of lupus yield negative ana but positive anti-ro test and other antibody blood work. You might want to ask your MD to refer you to a rheumatologist, the doc who specializes in inflammatory diseases of the joints and other systems. He might do that without you asking though, since my primary wont even order routine CBC blood work and has me travel to a lab towns away at 6am on a saturday. it all depends on you doctor though. I responded to you in the "does lupus cause numbness and tingling" post with some additional questions--
also, i have recently started having painful prickly feelings on the balls of my feet, primarily upon waking. Have you ever experienced anything like this?

 
Old 03-13-2006, 10:08 AM   #3
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armslee HB User
Re: Lurker with Questions

No, I haven't had the prickly feeling on my feet.
Burning pain in my legs a few times and burning everyday in my right arm from my shoulder to my fingertips.
These symptoms are aggravated with activities I have noticed. I felt pretty good over the weekend, but after being on the ol' computer all morning, I feel really lousy!!!!

Thanks for the bloodwork info.

Presently I have been self medicating for the pain and that has made it tolerable at times. It is truly amazing how much better I felt over the weekend though.

 
Old 03-13-2006, 12:01 PM   #4
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Re: Lurker with Questions

Hi Armslee -

Welcome! I suggest you begin by reading the stickies at the top of this thread as there is great info about lupus symptoms, labs, and such.

If you do have lupus, you'll feel lots better if you stay out of the sunshine. Really. A broad brim hat, sunscreen 45SPF or higher, long sleeves and slacks when outside will help. Staying inside from 10am until about 5pm will help, too. Do this for several weeks and you're likely to feel lots better. For some reason, the sun makes lupus symptoms (esp fatigue, aches,and rashes) much worse.

Also, many lupus patients become allergic to Sulfa. Since you've already had a reaction to Sulfa, don't take Celebrex as it has a sulfonamide in its chemical makeup. I didn't know I'd become allergic to anything until a doctor gave me Celebrex, my symptoms worsened painfully, and another doctor deduced I was allergic to it.

When you think of a question for your doctor, write it down and then keep the doctor with you until all your questions have been answered. A downside to lupus, is there's not really an instant answer about whether you have it or not.

Also, you can postpone the lumbar puncture until you or another doctor see it as the next logical step in testing.

Wishing you well! Barbara

 
Old 03-13-2006, 02:50 PM   #5
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Re: Lurker with Questions

Dear Armslee, Assuming for the moment that maybe your rashes are NOT caused by a medication reaction... (1) Do they last long enough to be biopsied by a dermatologist or dermatopathologist ( = a dermie who does his own labwork)? (2) Are the rashes on sun-exposed areas?

I ask because I had recurrent torso & upper arm rashes for years. At first they looked like red raised welts. They barely itched. After 4 years, the welts would appear but then "morph" into red targetlike circles, before expanding outwards and fading without depigmenting or scarring.

I also had bouts with UTI's, migraines, anemia, joint pain & swelling, burning shins, hair breakage, severe IBS-like problems, urinary problems, fatigue, neuro-like tingling (esp. up & down my arms, very creepy-crawly!), low-grade fevers, elevated sed rate, etc. But I never had the malar (butterfly) facial rash typically associated with SLE, so I never suspected lupus. The butetrfly facial rash & kidney nephritis were the only lupus symptoms I even knew of, and I didn't fit either...

Anyway, I finally went to a Manhattan rheumie & a dermatopathologist and was quickly Dx'ed with a "subset" of lupus called SCLE = subacute cutaneous LE. Despite the name, it's not "just skin". It tends to bring on milder systemic problems than full-blown SLE, but the full range of SLE problems is possible in some patients. I was positive for anti-Ro, but negative for ANA (negative ANA happens in 1/3 or so of patients with this "subset").

I write this to let you know that (1) there's a form of lupus that features nonscarring torso rashes; (2) you can have this form even with a *negative* ANA; and (3) skin biopsies can be a key finding to nail down a rash as a lupus rash.

For what this is worth... Any questions, feel free to give a shout! I hope you get on track with getting answers very soon. Best wishes, Vee

 
Old 03-14-2006, 08:30 AM   #6
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Post Re: Lurker with Questions

I am going through the same thing that VeeJ and have found this posting helpful and encouraging. I'm in the process of being diagnosed. First they thought MS and the Neurologist said "No". So now, I am off to a Rheumatologist to be tested for Lupus.

I have recurrent legs & upper arm rashes (dermatologist said it looked like psoriasis but not quite). I have red raised welts with scarring. I also get a nasty case of sun sensitivity. This rash makes me look like some scalded me with a dime all over my legs and upper arms.

More recently, I have had UTI's, migraines, joint pain & swelling (mostly hands), and low-grade fever. My back, legs, feet, hands, and arms have pins and needles sensation. My legs (knee and ankle), back, and shoulders ache. My neck is stiff. (Heck, my whole body is stiff in the morning but I am 40). The sides of my face were numb. I had problems with memory, stuttering, can’t find the right words to say, say wrong words when I meant something else, attention deficit, and problem-solving. I have EXTREME fatigue and at times blurred vision.

In the past, I have had chest pains and could not breathe or it would hurt severe to breathe. I have had severe stress headaches (top left side of head) that cause my eyes to roll back into my head. My husband thought they were seizures. My head would be soft in that area after these 10-30 seconds episodes. I had a hysterectomy because I suffered from Endometriosis and Adenmyosis .

I have been passed from one doctor to the next and I hear them say the tests are “fine”. “I don’t know what’s wrong with you”. I walk away feeling like I am neurotic and this is all in my head.

I started researching my overall symptoms and I have asked to see Rheumatologist to be tested for Lupus. I have not had an ANA test or any other tests for Lupus because the “global” blood tests came back fine. I questioned the last guy and he stated that they don’t test for Lupus if these tests come back “fine”. I asked can you have Lupus and these blood tests came back “fine” and he stated that he was not an expert in Lupus. So, I’m going to see someone who is an “expert”.

A friend of mine’s mother is a nurse and I was telling her that I wanted to be test for Lupus and she stated that because I do not have the butterfly rash then I do not have it. Now I doubt myself if I should see the Rheumatologist but VeeJ’s posting helped me tremendously. I am going to make him rule out Lupus definitely.

Thank You!!!
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I do not worry about what will happen; only on what needs to be done!!!!

 
Old 03-14-2006, 12:04 PM   #7
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Re: Lurker with Questions

Surya, Your mom's nurse friend may have meant well, but the info she provided is inadequate to the task at hand. But I gotta say that my suburban DOCTORS didn't have a clue, either, and they were all full-fledged doctors (dermies, rheumie, neurologist, gastroenterologist, urologist, and multiple GP's). This is despite my very first skin biopsy coming back saying suspected lupus. (I never even saw that report until I bailed out & went to a teaching hospital rheumie.)

Anyway, yet a little more on rashes... A particular lupus rash does not determine what extent/form of lupus you have, as the rashes can "cross subsets". For example, someone with ONLY scarring lesions and some arthritis & fatigue may indeed have "only" DLE = discoid lupus. But people with full *SLE* also are "eligible" to get discoid (scarring) &/or SCLE lesions. So what determines what form of lupus you have is the TOTALITY of your symptoms, not the rash type alone.

But knowing that a rash is a LUPUS rash is a great key. Then the dr. would know this patient has *some* form of lupus (SLE, SCLE, DLE, DILE, or one of the lesser known variants), and then would focus on determining WHICH form, how to treat, how to monitor, etc.

If you need a skin biopsy, I hope the rheumatologist you are seeing gets you to an appropriate one. I first went to someone who is a big name in cosmetic stuff, whereas a really up-to-date DIAGNOSTICIAN-type dermie would have been a better bet. (I just didn't know any better.)

The SCLE "subset" was only given its own classification criteria & name in the late 1970's. Thus I suspect many of my local drs. had never studied it or seen it. I think it's less common than both DLE & SLE. It favors women of western European heritage.

There are two forms of SCLE rash: one looks like psoriasis (but isn't); and the variant is the annular form (red circles). (My bad luck: I had the variant annular form.)

Anyway, I hope your rheumie appt. goes well and that you get, ASAP, a full & comprehensive history taken, all the major bloodwork & urine tests done, the rash investigated, etc. HANG IN THERE! Bye for now, Vee

 
Old 03-14-2006, 12:37 PM   #8
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armslee HB User
Re: Lurker with Questions

Thanks Vee for the info. I don't have the typical butterfly. I have a rash on my forehead and the side of my face. When I get hot, I have what looks like a red raised area across my nose and cheeks, but goes away when I cool off as do the places on my shoulders and chest and back.

I wished I was seeing a Rheumy. Unfortunately I am just seeing my internist. But he is a perfectionist and usually does listen to me and is beyond thorough so I have pretty decent faith in him. If he fails me, then I fortunately don't require referrals with my insurance plan so guess I can move along on my own.

Surya it was good to see a post from you. I remember reading your posts on the MS board a while back. Hang in there. This is such a grueling process. I know that I am not crazy though and that my symptoms are real. It is just getting to the right doctor and getting the right tests done to confirm my theories!

 
Old 03-15-2006, 11:45 AM   #9
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Angry Re: Lurker with Questions

Quote:
Originally Posted by armslee
Surya it was good to see a post from you. I remember reading your posts on the MS board a while back. Hang in there. This is such a grueling process. I know that I am not crazy though and that my symptoms are real. It is just getting to the right doctor and getting the right tests done to confirm my theories!
We're not crazy. I would rather just one of the doctors I have say that they don't know what it is but they are going to do whatever they can to find out what it is. Instead of that look of "you're neurotic and I don't want to deal with you". GRRRR! I'm disappointed because I believed that someone could help me and they're not. I know that they went to school to become a doctor but that doesn't make them smarter or better than me. I'm tired of being seen for 5 minutes and off they go to the next patient. Not only do I have to pay my $25 copay but they get money from the insurance. Not bad work for 5 minutes.

Sorry for venting. I'm just so tired of it all. I just want doctor to find out what's going on with me instead of passing the buck.
__________________
Dawn

I do not worry about what will happen; only on what needs to be done!!!!

 
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