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Old 12-03-2003, 10:24 AM   #1
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NikkisNYmom HB User
Unhappy Lupus? Reynaud's? Something else? PLEASE HELP!

Hi All,

I have been reading this board for 2 days now and felt comfortable enough to post the following and get some advice. I am sorry if it gets to be long but I would REALLY appreciate it if someone (angel? :-)) at least read it and helped me out. I don't know how else to get proper advice. I figure if I describe my symptoms in order of how they happened, I could get better help.

I am 34 yrs. old and have been very healthy until this year. About 4 months ago I had some chest pains but nothing bad. Just noticeable where you figure let me go have it checked. I also got dizzy, etc. But now I realize the dizzyness and headaches I had for one or two days were because I was stressed about the chest pain. It's weird how you are stressed even though you don't feel stressed. He touched my stomach and it hurt so he right away thought it was a stomach problem - like an ulcer. He did an EKG and it was fine and an echocardiogram and an abdominal/pelvic ctscan and they were all fine. So he said it's something related to gastritis, etc. But he took my blood anyway and it came back positive for H. Pylori. I took antiobotics for 2 weeks and after that I didn't follow up. During the antibiotics I had severe back pain for like 3 days I couldn't move. Then that went away and so did all the other symptoms. So I didn't do anything else about it. The only other thing I could do is an endoscopy and see if the h. pylori is gone and I plan on doing that in January. I still don't know if I have an ulcer or not because those symptoms went away. Ok that's in a nutshell what happened 4 months ago. Oh one very important thing that's either a coincidence or maybe NOW relevant. During the Summer when all this happened for about 3 weeks I had a red thing across my neck. I don't even know what to call it. It wasn't a rash or in patches or anything. It was straight across my neck like I got a tan. It would itch sometimes and others not. It got darker after a while and disappeared. The doctor thought that it was Summer and maybe my neck sweats and he thought it was not a problem at all. All that's gone though for like 2 months now. Except what's weird is sometimes right on the side of my neck I will itch for no reason. I know it sounds silly but when for 34 years you NEVER get sick - you start noticing these things.

OK THE REAL STUFF NOW.

About a month ago I got a treadmill to exercise. I had gestational diabetes when I was pregnant 2 yrs. ago - which you get only during pregnancy and it goes away. But they tell you that there's a 60% chance you will get diabetes within 10 years unless you are really careful. So I wanted to exercise and be healthy and lose weight also. I did 22 minutes 4 days a week on the treadmill. After a month I noticed my ankles were swollen. But not my ankles - the bone on the ankle? I don't know what they call it - I am blanking out. But what's weird is my ankle looks thin except for that side where it's swollen and my leg seems more swollen than my ankle. It's nothing drastic another person would see but I see it. I thought it was the treadmill so 2 weeks ago I stopped doing it. It's still swollen. Though in the morning it's less after sleeping all night. I didn't even make a big thing about that till now. Well 2 weeks ago while the ankle thing is happening, I also noticed something else. I came out of the shower - well was about to - something made me look at my hands and I swear I wanted to die. My hands were BLUE. I thought maybe I got ink on it by some weird coincidence. But nope. I of course came out of there hysterical crying. It's not normal to see your hands turn blue. Then of course I realized it was my veins. Only they were NOT bulging out at all. They were flat - just blue - like a map. After a few hours it got less and less. I don't know if it happened before and I never saw it or maybe it was the first time. I just noticed it that day 2 weeks ago. I didn't notice it again that week - maybe I didn't look. Last week it happened every day during my shower. I also thought I was seeing things because under the light it got bluer or maybe it's just because in the dark you don't see as much. End of last week and this week I am noticing it happens even outside the shower - just not as much as when in the shower. At first I thought the water is hot - but it totally wasn't - it was lukewarm. What's weird is under the faucet it doesn't get as blue at all. To someone else my hands look fine but to me I know they are very blue. My husband did see it very blue right out of the shower and he admitted it was something he never saw before. It's really the palms that are blue mostly and a tiny bit on the fingers near the palm - not really the tips. I did see it blue on one tip yesterday. Also this past week my ankles started hurting and my wrists, hands and fingers. I can still work and type but I am in pain. Not severe pain but pain anyway. Also, on and off - not everyday - I get this pain right on the blade/bone on my back on the left side when I breathe. It's not all the time. Also my toes are tingling. Last night I know it was cold but I had 3 pants and 3 sweaters on and I was still freezing. My toes and fingers felt like frostbite. The dr. did an EKG again when I went and he said that was fine. He said the chest thing could be a coincidence because I am worried or it could be the stomach thing - remember I never found out if I have gastritis which causes that. He thinks the hand thing may be Reynaud's but I am waiting for blood tests to come in on Friday. On Friday, I also asked for tests for Carpal Tunnel. He told me if it was that the toes wouldn't tingle. He's right I had tendinitis about 5 years ago that went away after like 2 months and I didn't have any symptoms other than wrist pain. But he's doing nerve tests on Friday. And I am supposed to see a rheumatologist but they don't have an appt. till January :-( The dr. did tell me even if my blood tests show I don't have Reynaud's or Lupus or anything it doesn't mean I don't have it. Well what are you supposed to do - take medication for something you might not have? I don't get it at all. He said you have no symptoms of Lupus but we don't know let's see.

I read some stuff on tendinitis and it is possible that all my symptoms are that too. It seems my symptoms fit so many other things too. How do you ever figure it out? Can I get some real honest advice please? I don't want advice where someone says yes you have Lupus. If I don't have the symptoms please be honest. I really just want the truth. Of course I am hoping to hear it's probably not Lupus. No one wants to be ill. But if it is that, I will deal with it hopefully with your help :-) I feel so alone right now with this. I am so scared to find out that I am ill. I have a little girl who depends on me. Otherwise I wouldn't care that much. No one wants to be sick but I could deal with it if it wasn't for her. I want to be healthy and alive for her. I have a friend whose cousin is dying of Lupus at 53 and I am soooooooooo scared you guys. Is it a deadly thing? Is it where you can't function or work, etc?

Thank you so much for your advice in advance. I truly truly appreciate it :-)

 
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Old 12-04-2003, 09:56 AM   #2
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AngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB User
Re: Lupus? Reynaud's? Something else? PLEASE HELP!

Hi NikkisNYmom and welcome to the board!!

First off, I have to apologize that I haven't responded yet. I have been so busy with doctors appointments and all that fun stuff.. anyway!

I read through your stuff above, and it really sounds like you could have Raynaud's Disease for sure. Have you reviewed all the symptoms of Lupus in this forum? There are the 11 Criteria from the American Medical Association as well as the St. Thomas Hospital criteria, where one of the worlds' best works out of. The symptoms do not have to occur RIGHT NOW. They can be accumulative, over the years. I will ask you some questions here You can highlight these questions and paste them into a "reply" so that its easier to answer them if you want to!

Have you ever had mouth sores?

Do you get very tired really easy?

Do you get black circles under your eyes, and do people ask you if you aren't feeling well?

Have you ever had kidney inflammation episodes, or documented inflammation of the heart, lungs, or other major organ?

Do you get headaches?

Do you feel like your eyes are dry or get the feeling that there is something in them?

What happens to you when you are in the sun?

What happens to your skin in the cold?

Have you ever had a positive ANA (anti-nuclear antibody), or other autoimmune tests? (like thyroid, etc)

Sorry there are so many, but this will give me an idea of what to think! Remember to think over the years, not just right now. I hope that this will help! It does sound to me like you definitely have the symptoms of Raynauds! The stomach problems could be Lupus related too, I have chronic gastritis from my Lupus.

At the end of your post, you asked a bit about Lupus. Every person with Lupus is different! Some people have very mild occurances of it, while others have quite severe symptoms (like your friend's cousin). With that being said, if we take care of ourselves and don't "over do it" then we can try and get ourselves as healthy as we can. Some people are healthy and only have flares once in awhile and others seem to be flaring all the time! A flare is when the body decides to attack itself and the person gets really not fun symptoms that occur. I am flaring right now- my stomach is very sore and all that. Also, the joint pain can get worse, the rashes get more pronounced etc. Not fun! With your friend's cousin, it could be that she may have gone a long time with Lupus and not been diagnosed properly. Sometimes it takes up to 10 years to finally get answers, and by that time irreversible damage is done to the body. Early detection and treatment is key before the damage occurs. I really hope this helps, please try not to be too scared- we are all here for you! Take care

~Angelic

 
Old 12-04-2003, 12:20 PM   #3
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Join Date: Aug 2003
Location: NY, USA
Posts: 85
NikkisNYmom HB User
Re: Lupus? Reynaud's? Something else? PLEASE HELP!

Hi Angelic,

Thank you for your response. Please don't apologize for not responding. I know we are all busy and don't expect someone to rearrange their schedule for me. Thank you for getting back to me as soon as you did :-)

Before I go on, you know what confuses me about having Raynaud's - IF I do? Well everywhere I read it says it's about feeling cold and trying to keep warm. Well when my palms turn blue I NEVER felt cold. I never felt hot or cold. And what's weird is both the symptoms and descriptions AND the dr. told me it has to do with one extreme weather condition to another - going from hot to cold and vice versa. But it's SO not true. I never experienced the blueness going from hot to cold or anything extreme. My showers were never SO hot - they were totally warm - even a bit cooler. So I don't get that. I don't get any colder outside than I am inside. If that's something internal that my fingers and toes feel without my knowledge then I don't know. Another thing is my fingers don't turn pale then blue then red like the websites suggest. My dr. told me that it IS turning colors I just don't see it. I mean what's that all about? It is but I don't see it? The best I can describe it is my palms look blue. My veins are more visible. They are not bulging. I will say these 2 things. The veins do bulge in the inside of my wrist. You know your vein going straight up the inside of your arm? Well the bottom part closer to the wrist DOES bulge when it gets darker blue. But not my palm veins. Another thing. The past couple of days I DO feel really cold but my husband told me so does he. It's just normally I can walk in a t-shirt and never get cold even throughout the winter in my house. MY fingers and toes - the tips are cold now. But what's weird is the times they are cold my veins are fine. Nothing is happening at the same time. It's not like I am hot then moving to a colder climate then the veins get blue. Know what I mean?

I did print out a couple of things from Lupus but I don't know for sure. It's one of those things where it's a fine line. For example the following:

Achy joints - ok I have pain in my hands and ankles though the ankles are not as bad the past day or two. But I don't know if it's considered my joints.

Fever - don't have any.

Arhtritis - well again swollen - yes the top of my hand seems swollen but is it the hand or the veins or is it that I am always on the computer.

Fatigue - it says extreme or prolonged. I am more tired than usual but I think I am more stressed out and I just want to sleep and forget it all.

Skin rashes - no but that time I had that thing across my neck in July and August - I don't know is that a sign or not.

Anemia - I don't know.

Kidney - I don't know. I had a ctscan in the summer and the scan showed my organs are fine but I don't know how they are functioning.

Pain in the chest on breathing - yes but not all day and not everyday. It could be my stress or if I have some kind of gastritis. Remember I did have H. Pylori that could totally cause it too.

Butterly shaped rash - nope

Hair loss - nope but I always had thinner hair but I am not losing any now.

Blood clotting - I don't know obviously yet

Raynaud's - I don't know because my fingers don't turn white or blue in the cold. They do it no matter what.

Seizsures - nope

Mouth or nose ulcers - nope

Sunlight - I work from home so I am not out much anyway except the weekend. I haven't looked at my hands but if you mean while I am out does it bother me - not unless it's glaring.

I read another criteria I think you said 11 somewhere but I don't have that in front of me now I don't know if I printed it or not. I did start eating more fiber and pineapple and taking one Bayer a day - and it doesn't do anything for me. I stopped having any seltzer which I love and caffeine because it suggests you don't do that. I followed it but I don't see what it's doing for me.

When you say the symptoms don't have to occur right now. How does someone know if they have it if it doesn't occur. I don't know 10 years from now - lol. It is hard to figure this out isn't it - wow.

The above I posted from my printout now I will answer your questions - k? :-)

Have you ever had mouth sores? - NO

Do you get very tired really easy? The past 2 days because I am worried about all this. But normally no.

Do you get black circles under your eyes, and do people ask you if you aren't feeling well? No and No.

Have you ever had kidney inflammation episodes, or documented inflammation of the heart, lungs, or other major organ? Not that I know of and I have been to doctors a lot in 2 years for follow ups and all that stuff. Many blood tests that are fine.

Do you get headaches? Not really.

Do you feel like your eyes are dry or get the feeling that there is something in them? No.

What happens to you when you are in the sun? Nothing as far as I know but all my life I get car sick when it's really sunny. But so does my younger sister. Since we were 4 years old or so. I don't vomit or anything but the movement in the heat bothers me if it's really hot but that's not so strange. I know plenty of people who that happens to.

What happens to your skin in the cold? I don't know since I haven't checked but the past few days when I am cold, I am just cold. My skin doesn't do anything. When it turns blue it's the veins in my palms and I do notice that the veins in my legs are more apparent. But with my legs I don't know if it wasn't always like that. I normally don't stare at my body - lol.

Have you ever had a positive ANA (anti-nuclear antibody), or other autoimmune tests? (like thyroid, etc) - actually because I try to lose weight all the time and it comes off so slowly or doesn't at all, I went to have my thyroid checked a few times. I got a negative for like 3 years than last year I got one positive then 2 tests after that were negative recently. The only thing that was high but within 2 weeks changed was my prolactin hormone level. It was VERY SLIGHTLY high so they rechecked it 2 weeks ago and it was perfect.

Thanks for the quesionnaire - I appreicate it. I should be sorry for writing you novels - lol.

I am honest over the years I have NEVER been ill. NEVER. Before I got married, no problems whatsoever. Four years ago when I got married the only 2 things that I can remember are my periods would be like 3 weeks late most of the time except for one or two months which were on time. That's actually why I made them check my hormones last month. I never bothered asking before I thought maybe my weight gain since marriage did that with my period. That's usually irregular except this month it was a day early :-) Perfect so happy about that. The only other thing I can notice is I have dryer skin - lol. That's really it. My first and only problems started this summer with my chest pains and they did 3 ekg's so far and an echocardiogram - I was perfectly fine.

I don't have stomach problems that I know of. My stomach never hurt and I NEVER have heartburn. That's why when the dr. said I could have gastritis and ulcer related stuff I laughed. I NEVER get heartburn but he said that's irrelevant. Then he found out I had h. pylori which technically the meds should have cleared up by now. I will follow up with an endoscopy to make sure. Otherwise I feel totally fine in the stomach area.

The only other thing I can possibly think of is back aches every other day. But that can also be the way I sleep, move, I am in a chair all day typing and don't sit up the way I should, I need to lose like 40 lbs. that could do it. That's the problem all my symptoms except the blueness can be SO many other things - right?

Thank you so much for your response and for your help and for your kindness. I feel so comforted knowing you guys are here. I will surely update you tomorrow night after my nerve conduction test. Also, the rheumy called today - they moved up my appt. to Dec 11th (my bday :-) I am hoping she says I have nothing - lol. I am so sorry for my mega long post. I assure you from now on it will be shorter. I just wanted to get all the info to you so you have a better idea. I hope we can continue posting to each other even if I don't have it. I am not the type to skip out on friends. I am busy so I can't write everyday but I will try my best to keep in touch anyway. I'd love your advice on this post of course :-)

Thx.

 
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