[ConfusedInHawaii]

Hi - I've never written on a message board before so forgive me in advance if I do something incorrectly

A few years ago I started having the below symptoms and I went to my family doctor. After a scan she told me I had a cyst in my sphenoid sinus and that could be causing my head symptoms. I went to an ENT and had another scan. My cyst burst in a couple of weeks and that turned out fine. But my vision and light sensitivity issues kept persisting along with my confusion and brain fog. So she sent me to an Optometrist and a Neurologist. The eye doctor told me I must be having visual migraines. The neurologist thought I had MS but ruled it out after a couple scans.

Because my symptoms come and go mostly with my crazy stressful job I just thought maybe I was a little nuts or something and was embarrassed to go to the doctor. Well I’ve been feeling crappy again for the last couple weeks and my husband got tired of my complaints and I went to the doctor on Thursday.
She didn’t tell me what she was looking for but several tests she ordered leads me to believe shes testing me for Lupus. (ANA, Sed Rate, CPK…) While I’m waiting for my results I couldn’t help myself and started reading everything I could find on-line about Lupus and I think she might be right. Part of me is really scared but the other part is glad that I not going completly nuts and could get some sort of relief with treatment if Lupus is what I have…I want my body and mind back!

On and Off Feelings over the last 3-4 years
Can’t think clearly, foggy, confused and can’t focus
Pressure or fullness in head and back of neck
Sensitive to light including computer monitor
Bright pin spots of light in my vision
Dizziness
Waves come over me like an anxiety attack
Water Retention / feet and ankles swelling
Pressure or full chest
Heartburn
Harder to Breathe
Wheezing Chest in certain positions
Hands and Feet will fall asleep or get tingly
Muscles hurt for no reason
Feet hurt really bad some days and not at all other days
Tired/exhausted like I can barely hold my body up
Feel like I might be getting a bladder infection but don't
Get really hot like I have a fever but they quickly pass
Cold feet and hands
Over the last months hands hurt when I try to open things
3 spots on my body that were red and scaly but now are brown

 

[keebler]

Hi ConfusedinHawaii,

It is nice to meet you. You have found a great forum to learn about lupus and everything that goes with it. There is many members here that it has taken years to get diagnosed.

Here is a link that you might find helpful. It in the top half of "Not diagnosed yet."

http://www.thelupussite.com/forum/showthread.php?t=33123

Read all that you can on this board. I always say knowledge is power. You will know what your doctor is talking about when you go to him.

Going to a rheumatologist who specializes in lupus would be the best doctor for you.

You can post questions or do a search on this board or go into the chat room and talk one on one with members.

Take care and please let us know how you are doing.

:flowery:
Lyn

 

[ConfusedInHawaii]

Thank you for the aloha!

Do you think maybe I don't have Lupus since you directed me elsewhere?

 

[keebler]

Hi,

I didn't direct you elsewhere, that is a link to a post on this site. What I directed you to is a list of what doctors look at as far as symptoms go for lupus. There you can see what the doctors look at. Lupus has many faces and affects us all differently. I have a brother with SLE like I have. I have different symptoms than he does and he has symptoms that I don't have.

I am not a doctor and and can not tell you either way if you do or don't have lupus. I am just going on my experience with lupus.

There are members here that are not diagnosed, looking for answers. Then there are members here that know someone with lupus or a love one has lupus.

If you look at the board you will see different topics. Like Living with Lupus, medications, not diagnosed, under 20, a section for men, etc. That link I gave you is in the not diagnosed section.

Take care,
Lyn

 

[macfamily53]

Dear Confusedinhawaii

I just want to welcome you and let you know there is so much information in here that will help you out.There is no way any of us can tell you wether or not it is lupus or not but there sure is an awful lot of support for you in here and lots of people to make you laugh also and help you forget yourpains for awhile anyway.I was one of the fortunate people i guess you could say that was diagnosed with lupus with in a month or so but had been showing signs of it for years.I went into the hospital about2 years before for a hysterectomy and they found through a blood test that i was not clotting to fast at all.It is a blood test they check to see how fast you clot and i was at 12 to 15 minutes before i would clot and after 7 weeks of seeing some kind of specialist they still knew nothing but decided to go ahead and do the hysterectomy and wow i was scared but all went well thank goodness but still knew nothing:sad: .Everyone told me to contiunue to try and find out what was going on but i refused to and two years later i woke up one morning with a rash on my body and the next day was swollen hands and feet then decided i better call my go who took lots of blod work and then sent me to a rhuemotoligist who diagnosed me with lupus after a lot more blood test.Im so sorry lol that i went on and on with my story.I guess long story short it unfortunately does take awhile to get diagnosed because lupus is a disease of 100 faces.they just do not understand everything about it just yet but sure hoping they do soon for people like your sakes.Take care and let us know what happens.

Tammy

 

[mysharonna]

Hello, and welcome!:wavey:

Waiting for test results can be anxiety ridden and scary. This is a great place to find out info, talk with people who are feeling like you and have a couple of laughs along the way.

I wish you luck with your results. Sometimes it can take awhile to find the answers to why you are not feeling well. Whatever the result, lupus or not, if you are not satisfied with the answer and still not feeling well, listen to your body and persist with your doctor. You are your own best advocate.

Hope you are soon feeling better and get the answers you seek!
Sharon

 

[ConfusedInHawaii]

Thanks for your responses. I'll check other threads on the site.

The waiting is just driving me crazy as I'm sure you all understand.
I just want them to figure out was wrong and make me feel better thats all.

Hopefully I'll know something tomorrow.

Much aloha

 

[Clare.T]

Welcome to the forum !
Waiting is awfully hard but something we have to accept and learn to cope with. Answers rarely come fast - its more a question of step by step narrowing possibilities down. I can't say if she has lupus in mind or not, but you shouldn't necessarily draw that conclusion from those tests.

ANA is a general screening test and can be positive at low levels in a wide variety of illnesses including infections. SED rate is a sign of general inflammation for any reason and there are any number of reasons for an elevated CPK. Some of them are autoimmune connective tissue diseases in the same family as lupus. If there are abnormal results for any of these tests further testing will have to be done, and more waiting I'm sorry to say.
These are not classic symptoms of typical lupus but lupus can take so many forms that anything is possible. The point is that the more untypical the case the longer it will take to diagnose and you will almost certainly need referral to at least one specialist who knows about lupus whether a neurologist or a rheumatologist or more than one for expert evaluation and specialised testing.

Reading the emedicine article on sphenoid sinus problems gives me the impression that several of your symptoms could be related to teh after effects of that. Previous health problems can either illuminate a lupus diagnosis or make diagnose that much harder.

The main thing is that you have taken the first steps to getting answers for your health problems and hopefully the causes can be treated successfully bringing you relief from the worst symptoms and stopping the disease progressing if possible.
I suggest you stop reading up everything you can about lupus because it might be soon apparent that it isn't lupus at all so you'll have wasted time and emotional energy.
General information about testing is useful.

Maybe a dermatologist would have some helpful comments about the skin problems. A biopsy can show if lupus is present and would clinch a diagnosis although there might be other diseases causing other symptoms.

There is disease modifying treatment for lupus and similar diseases that can help relieve certain symptoms but many other symptoms are treated with medicines that are symptom relieving whatever the root cause.

Let us know how you get on - we'll help you all we can !

Clare

 

[ConfusedInHawaii]

Thanks Clare

I can get stuck on things and I don't always see the forest through the trees. I'll stop obsessing and just wait...although it will drive me crazy

If it turns out to be Lupus theres no question in my mind this would be an understanding supportive group to lean on.

Mahalo