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Hello. New and Very Scared. Doctor Just Called.

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Old 06-04-2009, 07:01 AM   #1
Join Date: Jun 2009
Posts: 5
Conniel7777 HB User
Unhappy Hello. New and Very Scared. Doctor Just Called.


I had blood drawn a week ago. The Rheumatologist just called. her words were "I just got the results of your bloodwork. its not good. its nothing so serious that I need to see you immediately, but I definitely need to see you within the next two weeks."

Needless to say, I told her I wanted to see her immediately. I have an appointment 3 hours from now.

I dont know for sure all of the tests that were run, but I know some of them.. CRP, ESD and Lyme... I dont know if any were run having to do with APS or Sjogrens or anything like that.. all I know for sure is the bloodwork is "not good".

As for symptoms I have had over the years, and what brought me to a Rheumatologist, Opthamalogist and a Neurologist to begin with:

I have had Raynauds in my hands, feet and oddly enough, my tongue, for 11 years. When I wake up in the morning, my fingers are stiff and slightly swollen, but not painful. they loosen up during the day, but only a little.

I am always cold, especially at night. I often sleep with warm socks and a hat on my head. I am always "catching a chill", so I bring sweaters everywhere.

What prompted me to even see a Rheumatologist was i spoke to my GP about the Raynauds, and she decided to run an ANA on me, which came back at over 300. Since then, I have had a normal urine test, a normal chest x-ray and x-rays of my wrists ( because they hurt sometimes ) and again, normal wrists except for some mild arthritic changes.

I had the nail fold test, where the Rheumatologist puts oil on the nail bed / cuticle are of your fingers ( specifically the ring finger ) and looks for abnormalities in the blood vessels there. She said mine were "borderline", meaning that are some changes / distortions present. when I look just above the cuticles on my ring finger, I can see what looks like little tiny specks of blood.

My eyes are sensitive to bright lights and sunlight. if I am in the house all day, then walk outside and the ground is covered with snow, I will see a flash, and then get an occular migraine. If my computer screen is very bright or has glare, I get an occular migraine. Even on a day where the sun is not shining bright, just the whiteness of the sky will sometimes be too much for me, and I will have to wear sunglasses.

If I get a bruise on my calves, its takes forever to go away, like YEARS. ( if I bruise anywhere else on my body, it goes away in a normal amount of time, but if i bump my calves, the bruise lasts forever and ever, and the resulting bump can stay indefinitely. )

For the last year and a half, I have felt slightly dizzy / lightheaded. Nothing that would make me fall over, and not enough to make me nauseous, but just feeling a little bit "off" or "tippy".

Sometimes my arms feel weird: for a period of about a week and a half, I had muscle spasms? Pain? in my upper arms.. sort of like I had just had a tetanus shot, even though I hadnt. Also, the tops of my forearms felt weird, like tingly or "floaty".. hard to explain. ( of course, this could also be attributed to my weird neck.. I have whats called "Military" or "straight" neck.. there is no curve in my neck. it runs in my family... anyway, this causes problems w/ tingling & somewhat numbness in the arms anyway, especially at night, so for all I know, this is whats causing the weird feelings in my arms. )

I also have had 3 MRIS.. 2 of the brain, with and without contrast, and one of the spine, w/ & w/o contrast.

The spine was completely normal.

The brain showed 3 white lesions of "non specific" nature. I saw a neurologist for this. She said although the lesions "look just like" MS lesions, she doesnt think I have MS because I have no other criteria or symptoms that fit. The two brain MRIS were done 6 months apart, and there was no change in the lesions, and they never "Lit Up", which means they were not / are not active.

What prompted me to even have a brain MRI in the 1st place was because I had been having whats called "Binocular Diplopia" which is double vision that persists even when you cover either eye. This would happen when i was very tired, and after 8+ hours staring at a computer screen. The Opthamologist said I definitely DID NOT have Optic Neuritis, and diagnosed me with something called "exophoria" in my left eye. The muscle in that left eye is weak.

The Neuro said I may very well have been born with a weak muscle in that eye. She said that when people w/ MS have attacks of double vision, they last for days or longer, and it doesnt only happen when tired.

My double vision happens only when tired, and I can actually feel when its about to happen.. if i quickly close my eyes ( and rest them for a few minutes ) I can prevent the attack. Even if the double vision actually happens, if I close my eyes ( again, to rest them ) it goes away in about 10 minutes.

I have also had rosacea since approximately age 30. ( well, I always thought it was rosacea, and even saw a dermatologist about it; now I am thinking it was probably never rosacea, but more likely the lupus rash )

The only other weird symptom I have is Occular Migraines.. with the zig zag lines, flashes, etc..90% of the time, no headached follows. the 10% of the time I do get one, its very mild.

3 times in my life I can recall having episodes where all of the sudden, I got mega brain fog.. I knew what I wanted to say, but I couldnt make the words come out of my mouth. for about an hour, I also had confusion and weird thoughts, like I couldnt tell the difference between a conversation I had 10 minutes ago, or a dream I had the night before.. like "Did I just talk to Mary a few minutes ago, or did I dream about Mary last night? Did I stop at the store this morning, or I am remembering the time I stopped at that store when I was in 4th grade?" scary, right?

I dont know if that would be considered Lupus brain fog or not. I mentioned that to the Neuro and she said "that definitely sounds like a migraine".

I didnt know you could have a migraine that was that serious-- serious enough to cause that kind of confusion -- without having any pain, but I guess its possible.

Sorry if I am rambling, I am just scared...

So thats my story so far.. off to the Rheumatologist in 2 1/2 hrs....

Last edited by Conniel7777; 06-04-2009 at 08:10 AM.

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Old 06-04-2009, 08:12 AM   #2
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Re: Hello. New and Very Scared. Doctor Just Called.

Connie, hi. This may not reach you before you see your rheumie... The biggest thing I see in your post is not that she needs to see you, but that it's "nothing so serious" she needs to see you immediately. (Not that you wanted to hear that, either, of course!) She's probably looking at various autoimmunes within rheumatology. That would include APS (antiphospholipid syndrome). There's a "sticky post" on APS at the top of the thread list.

Fingers crossed that you'll learn more, which will get you *treatment*. Know that MANY people can do pretty well with these conditions with (again) TREATMENT, follow-up's, making lifestyle changes (if needed), etc. Better you know now and get the help you need, so you are able to keep things to as dull a roar as possible! Hang in there. Good luck with your appt. Post more when you get home, OK? Warmest wishes, Vee

Old 06-04-2009, 08:52 AM   #3
Join Date: Jun 2009
Posts: 5
Conniel7777 HB User
Re: Hello. New and Very Scared. Doctor Just Called.


I just read your post, and I am on my way to the doctors now...

I am glad that she didnt feel it was super urgent enough that she had to see me right away.. that did make me feel better. Of course, i want to know ASAP whats going on!

I will definitely post an update as soon as I return.. I just hope she is willing to give me an actual copy of the bloodwork so I can have it for future reference.

Thank You so much for your reply.

Off to the Doctor...

Old 06-04-2009, 09:53 AM   #4
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Re: Hello. New and Very Scared. Doctor Just Called.

Connie, saw your response. Good idea to ask for copy of your labs! I'm out this aft. but will look for updates when I get back. I'm sure you'll soon hear from others, too---lots of nice people here. Bye for now, V.

Old 06-04-2009, 12:28 PM   #5
Join Date: Jun 2009
Posts: 5
Conniel7777 HB User
Re: Hello. New and Very Scared. Doctor Just Called.

UPDATE POSTED ON THE BOARD UNDER "UPDATE TO New and VEry Scared: What The Doctor Said"

Old 06-04-2009, 12:39 PM   #6
Join Date: Nov 2008
Location: Henderson, NV, USA
Posts: 55
Triciah614 HB User
Re: Hello. New and Very Scared. Doctor Just Called.


WOW!! Reading your post sounds a lot like my story. It seems that those of us with autoimmune diseases also have many other ailments.

I also understand your apprehension regarding the phone call you got from the doctor's office. I know that when my blood work comes back normal, my doctor's office leaves a message saying all was fine. If there's something wrong, then my rheumatologist leaves a message asking me to call them. Every time I hear to call them, I get butterflies.

Please let us know what your doctor says. I will be thinking of you.

Take care,

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