View Full Version : Hi I'm new!

06-06-2011, 08:29 AM
Hi i am new to the forum. Im dont know if i have lupus. I am really just here to try to answer some questions I have about whats happening to me.
I recently started having some strange symptoms. Im not sure what it is yet so I am going to see a my GP today. In my teens i was diagnosed initially from a really dumb GP that i had scabies. Then after weeks of treatment and it not going away my mom took me to a derm. She then diagnosed me with psoriasis. It was not really relieved by the creams they gave me but it did eventually go away. Following that I have had chronic kidney infections and have always had at least a few lesions some where on my body. About six months ago i started experiencing ringing in my ears. I am now turning 32 this year and we went on vacation to a beach several weeks ago. Last week i began having a pulsing whooshing sound in my left ear. My husband started looking on line for something that would explain the sound in my ear. He found some pictures of people who have a butterfly rash... They look just like me! So I went to see a friend of mine who is an ENT. After a hearing test he determined that i have nerve damage in both ears but more severely in my left. He also confirmed the face rash as being the butterfly rash. He is sending my for a Ct with contrast to rule out a vascular abnormality. I now also have lesions on my whole body and some of the time they do itch. I have been getting sores in my nose. I have had quite a bit of fatigue but have been able to function, i have just been attributing it to the fact that I started taking full-time classes at the university and work and and have a 3 year old. Anyway that is me and my recent developments. I really am just looking for support and answers. Thanks for letting me hang out around the forum and take in all the amazing knowledge you guys have on the subject.

06-06-2011, 09:24 AM
Hi Suzanne, welcome to a great group of loving people. I am new here and have received much encouragement. Sounds like things are a mess. I'm so sorry to hear all of this. I hope they send you to a good rhumatologist and run blood work. The process was long and rough for me, but I was finally figured out. Bless you on this journey. I know you will find lots of support and wisdom from many here. I document everything and take pictures of each strange thing that can be seen, because sometimes symptoms come and go.

06-06-2011, 09:51 AM
Hi Suzanne! Welcome to WHL! This is a place not just for people that have been diagnosed with Lupus but for people with other Autoimmune Diseases (AI) or people like yourself just trying to figure it out. For many of us it takes years or decades to get a formal diagnosis. Often times we know what is wrong with us long before the doctors say so! It is really difficult to find a doctor that really understands how to diagnose Lupus. There is a sticky (meaning at the top of the page) in the Newly Diagnosed section that tells all about the requirements needed to get a Lupus diagnoses.

I hope that your time here helps you sort things out! Feel free to look through the old threads or start new ones if you wish. I look forward to getting to know you and welcome to the WHL Family!

06-06-2011, 09:57 AM
Thanks for the encouragement guys! I'm definatly going to be taking pics! I don't need to worry about pics of the butterfly rash though I have millions of them! i guess i've had it for years I just didn't know what it was. Hopefully I will get some answers soon. Thanks again!

06-06-2011, 09:04 PM
hi suzanne,
something many of us found helpful, when talking to doctors. is to have a pain diary.
in it we list what is going on with our body and when.
there are a few threads about this subject. they might be worth reading.

06-07-2011, 06:31 AM
Hello Suzanne,

A lovely warm welcome to our lovely family of the WHL and your with the best group of people going worldwide and besides that there's so many threads containing info for you to learn from and anytime your stressed come on and there's always a member on line to answer in due course.

You've had identical issue's to myself i had the ringworm which they put it but the only difference is it does'nt pronounce itself like ringworm i was sent to a dermo like yourself bloods done and i had psoriasis like yourself and the next time i went i had raynauds develop.
I've also had the butterfly rash years ago and that took quite a few months to move but never new what it was but i do hope your dermo as you on steriod based creams as they work excellent.

Refering your ears i had the same trouble and my left ear drum bursted open and i'm under ENT for TMJ which can develop being linked with Lupus besides developing otherwise. I also have the sores up my nose, your actual Dermo can run blood tests besides to see if anything is linked to Lupus or any Autoimmune disease, so i suggest asking him. Mines a brillaint bloke and i can never moan at his expertise.

It sounds to me that you have symptoms linked to Lupus but i'm not a doctor to diagnose but just keep pushing them.

Terri xxx

06-07-2011, 08:20 AM
So yesterday i went to my GP. My ENT had already sent her an email about my face rash and the lesions on my body so she was already very receptive. Such a relief!! I really thought i was going to go in there and have her send me out thinking i was crazy. She did a skin biopsy and a ?rheumatoid panel? i think and referred me to a Rheumy. She said the skin biopsy should be back Thursday. I am just so relieved that she was so awesome! I have heard and read so many horror stories that I was really expecting her to turn me away. Yay! Im on my way to relief! I hope!

06-07-2011, 08:40 AM
Oh that is such wonderful news!! Please keep us posted! Terrie is out resident family member with a good enough memory to pull the post back up (and we are SO thankful). I, most likely, won't remember but it doesn't mean I am not concerned (I can't remember anything that is not on the family white board!). If Terrie misses it (which is doubtful) use this or start a thread to give us the update Thursday!

06-07-2011, 09:01 AM
I was wondering... What exactly are they looking for with the skin biopsy? I tried to look up some info but it didn't look like they could get the luminecandimmuno- thing-a-ma-bob done in 2 days. any thoughts?

06-07-2011, 09:14 AM
Hi Suzanne,

I'm ever so pleased for you mate, at least your going to get somewhere now and that's what we love to hear on the site when things start happening and i really hope your drop on a good rheumo besides plus i hope the biopsy brings in what your suffering.

((Hugs Terri)) xxx

06-07-2011, 09:20 AM
Suzanne i'm adding why the skin Biopsy is for and it's mainly for confirmation of psoriasis and the Luminesscence Immuno is for testing the strength of your immune system also.

Skin biopsy

Psoriasis symptoms can vary widely from flat, shiny scales to crusty red bumps anywhere on the body. Often, a doctor can simply examine the skin to confirm the symptoms of psoriasis and make a psoriasis diagnosis. She'll consider what the lesions look like, as well as where they're located on the body.

For instance, fingernails can show telltale signs of psoriasis because the disease can cause them to become thick and scarred with tiny pits. But sometimes diagnosing psoriasis requires more detailed study than a doctor can provide with the naked eye, making a skin biopsy necessary.

A skin biopsy is a simple procedure in which skin cells are taken from an affected area of the skin, such as a lesion, and examined under a microscope to confirm that the abnormalities in the skin cells really are psoriasis.

Psoriasis Skin Biopsy Step-by-Step

Skin biopsies for psoriasis are typically done in a doctor's office rather than a hospital, and they're usually performed by a dermatologist, who can choose from several different skin biopsy methods.

06-07-2011, 09:32 AM
I want to add one thing to Terries post. There are also several types of lupus rashes that can be diagnosed via a skin biopsy. If that was already brought up forgive me I am on my phone from the socs

06-07-2011, 09:47 AM

Your correct on that one it can test for more Dermatitis, psoriasis, cancer and more besides testing the nerves in the skin but i do wish Suzanne the best with her results. xxx

06-07-2011, 03:06 PM
Welcome! : )

It is a huge relief to hear you are being treated well by your doctors and that they are actually giving it all consideration! : )
A lot of the time they can be difficult and delay things unnecessarily. It sounds like you are set for a relatively smooth diagnosis, even if it takes a little time.
Apparently getting a bit of sun before a blood test can help the bloods properly reflect your condition as well.
I experience hearing loss as well but I have been a fool for years and haven't been looking after myself... so now we are playing catch up on everything with a good GP.

I hope your diagnosis does go as smoothly as it seems it will : )

06-08-2011, 08:52 AM
Hi Suzanne,

How are you feeling today and i hope it's a day less pain free for you, please keep we all updated.

Terri xxx

06-08-2011, 09:38 AM
I am so glad you were heard and symptoms were addressed. Yes there are horror stories of docs who don't listen, but there are also some wonderful docs who hear us and treat us, thank God!!! I don't know much about the lesion realm, as mine have nevr been addressed. They are not so invasive for me and so low on my list of many maladies(grin). Sounds like yours are very noteable! I hope you get all the care you need saan. Hang in there.

06-11-2011, 09:53 AM
so far no results! and now its saturday so im sure i wont hear anything at least until monday. an now to top it off im un steady on my feet. not dizzy really just umm unbalanced. has this happened to any of you?

06-11-2011, 10:54 AM
so far no results! and now its saturday so im sure i wont hear anything at least until monday. an now to top it off im un steady on my feet. not dizzy really just umm unbalanced. has this happened to any of you?

Try not to worry about that. Yes, it happens to MANY of us. I myself had to get a cane to use on bad days. I figured out falling was not what it was made out to be! Try not to get up to quickly and take your time walking. You don't want to hurt yourself

06-11-2011, 01:30 PM
Yes at the onset of SLE I got unbalanced and fell at times. There are so many odd symptoms I started noticing. Thank goodness you heard. Blessings to you.

06-11-2011, 05:12 PM
Hello Suzanne,

I hope your coping ok till you get your results and as soon as you hear anything please update we please.

Terri xxx

06-11-2011, 08:57 PM
Hi Suzanne,
Welcome to WHL. You sound a lot like me. I had psoriasis symptoms as a teen, but mostly ignored them. I started having balance problems in my mid-thirties, and then was diagnosed with Meniere's Syndrome in 1999. From then until 2007, I gradually noticed more and more skin rashes, including the butterfly rash, and joint pain. I finally got a good dx in 2008 - Mixed Connective Tissue Disease, which means that I have symptoms of several AI diseases - Lupus, Sjogren's, Psoriasis, RA, with Spasmodic Dysphonia and the Meniere's (or autoimmune inner ear disorder) thrown in.
You are lucky that your docs seem to be working as a team and are on top of it. Hopefully, they will soon get you onto the right meds to keep it all under control.
Let us know what you learn next week.

06-12-2011, 05:22 PM
@marla, i hate to pry but did you have any dizziness with the balance problems? i dont have dizziness just tinnitus in both ears with some hearing loss but with no fluid. any help would be really appreciated

06-12-2011, 05:34 PM
Hello Suzanne,

You have to be careful with tinnitus as it causes virtigo bad, where it knocks you off balance and also to the point of passing out.

I'll add some info below on it to help you.

Terri xxxx

06-12-2011, 05:42 PM

What causes tinnitus?

Tinnitus can arise in any of the following areas: the outer ear, the middle ear, the inner ear, or by abnormalities in the brain. Some tinnitus or head noise is normal. If one goes into a sound proof booth and normal outside noise is diminished, one becomes aware of these normal sounds. We are usually not aware of these normal body sounds, because outside noise masks them. Anything, such as ear wax or a foreign body in the external ear, that blocks these background sounds will cause us to be more aware of our own head sounds. Fluid, infection, or disease of the middle ear bones or ear drum (tympanic membrane) can also cause tinnitus.

One of the most common causes of tinnitus is damage to the microscopic endings of the hearing nerve in the inner ear. Advancing age is generally accompanied by a certain amount of hearing nerve impairment, and consequently chronic tinnitus.

Today, loud noise exposure is a very common cause of tinnitus, and it often damages hearing as well. Unfortunately, many people are unconcerned about the harmful effects of excessively loud noise, firearms, and high intensity music.

Some medications (for example, aspirin) and other diseases of the inner ear (Meniere's syndrome) can cause tinnitus. Tinnitus can in very rare situations be a symptom of such serious problems as a brain aneurysm or a brain tumor (acoustic tumor).


06-12-2011, 07:21 PM
@marla, i hate to pry but did you have any dizziness with the balance problems? i dont have dizziness just tinnitus in both ears with some hearing loss but with no fluid. any help would be really appreciated

Hi Suzanne,
No, I never did have vertigo or dizziness very badly. However, I could be walking down the hall at school, and suddenly hear noises in my ear that sounded like I was in the middle of a hearing test - whistles and beeps, etc. - and it would mess up my balance. If I wasn't near a wall to grab onto, I would fall in a heap. Scared a few students and colleagues!
The lack of fluid drove the ENT crazy, but she called it Meniere's anyway. Later, my rheumy said that it was more likely Autoimmune Inner Ear disease, and blamed the dry ears on my Sjogren's.
Here's some good info on AIED - http://www.vestibular.org/vestibular-disorders/specific-disorders/autoimmunity.php
Autoimmune Inner Ear Disease (AIED)
When a virus attacks, the immune system defends the body. When the immune system malfunctions, its defense capabilities sometimes mistake the body's own cells for invading viruses or germs and attack them, which is referred to as autoimmunity. The immune system can attack the whole body or just certain systems, including the ear. Even if the ear is not being directly attacked, debris created by an autoimmune reaction in one part of the body can be transported to the ear by circulation and cause harm. When the ear is itself attacked, this is known as autoimmune inner ear disease (AIED). The progression of damage and functional loss caused by AIED can be rapid.

In general, autoimmune disorders occur more frequently in women than men and less frequently in children and the elderly. In addition to AIED, autoimmune disorders that can affect the ear include Cogan's syndrome, relapsing polychondritis, polyarteritis nodosa, Wegener's granulomatosis, systemic lupus erythematosus, ulcerative colitis, Sjogren's syndrome, and rheumatoid arthritis.

The most prominent symptom of AIED is bilateral asymmetric progressive or fluctuating sensorineural hearing loss, meaning hearing loss in both ears of different severity that occurs unpredictably or worsens over time. The hearing loss typically occurs over several months but can progress over several years and is often accompanied by tinnitus. The presence of vertigo and other symptoms typically related to vestibular loss depends on the degree of the loss and whether the damage has triggered a problem with fluctuating function (for example, if endolymphatic hydrops developed from the autoimmune reaction). The symptoms of autoimmune problems can be similar, even indistinguishable, from other vestibular disorders; Meniere's disease is sometimes present.

I hope this helps. My problem isn't too bad anymore, but I have lost some hearing, especially on the left side. I still occasionally hear loud ringing in one ear or the other, and I just have to sit down for a bit until it passes.

06-13-2011, 08:08 PM
i because of the lack of fluid or other build ups in my ears and the nerve damage in both ears i mention the autoimmune inner ear disease. he sort of laughed it off be cause that general effects one ear and not the other? huh? i have nerve damage in both ears but more sevarely in my right but i guess not enough for him to even think that could be a cause. i will also mention again i wont even be 32 until october. Thanks for the wonderful information. I really think it is amazing that we can draw on all the experiences of each other rather than have to continually make our own path. Thanks soooooo much!!

06-14-2011, 10:45 AM
It makes me upset when docs are so rigid. They have the rules that they probably learned in med school, and if we as patients don't fit in their little box of rules, then we just can't have that! I think of it like this - we are all individuals, and every individual body deals with these AI diseases differently. It seems that if they would really listen to us and observe carefully, they just might learn something new about our diseases.
I definitely have problems with both ears. The last time that my hearing was checked, I had lost 60% in my left ear and 30% in my right ear. I feel that I know when my hearing "ratchets down". That happens when I get a lot of tinnitus in one ear or the other, and then I notice that my hearing is worse in that ear.
Try to see an otologist or an otolarygologist. Those have been the best for me.

06-16-2011, 06:19 AM
Hi Suzanne,

How are you feeling?...and i hope your day is more pain free. xxx

06-17-2011, 04:16 PM
ok i got my results from my punch biopsy and labs. my ana was negative. my doctor was really surprised. (which inspired my to start the survey thread on ANAs, please visit!) any way most everything was normal- abnormals were as follows-- all and any insight is appreciated and sought after!!!!
Labs / Result / Normal Range
RBC / 5.13 / 3.80-5.10
Hemoglobin / 15.1 / 11.5-15.0
HEmatocrit / 44.4 / 34.-44.
vit d 25- hydroxy / 30 / 32-100
CCP antibodies IgG/IgA / 54 / 0-19
sed rate / 2 / 5-39
I know most of these are almost normal. I just feel like with all these lesions on my body i should find something. I also realize that the CCP antibodies is pretty high and that is usually a sign for RA.
My punch biopsy basicly said its not psriosis and its not cancer or a inflammed hair follicle and considering i have these all over my body im pretty happy about those results.
I have yet to get the CT with contrast because.... even with insurance its gonna be expensive.
My balance still stinks, my ears still ring and pulse, i still have lesions. Now i just have some medical bills for test that show me nothing to add to the mix. Anyway. thanks for letting me vent. and any ideas of the labs are welcome.

06-18-2011, 05:59 AM
Hi Paula,

Lab results can show false with anything linked to Lupus as it plays with the bloods so much.

I'm adding two links below so you can search on Medicinet to match results and the other Link explains results and having to Lesions something is causing it. xxx

www.medicinenet.com › ... › sedimentation rate article