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I'm not sure what to think?


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#1 Tonyia

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Posted 20 August 2008 - 08:56 AM

About 4 years ago (when I was 29) I had some blood tests done (a rheumatoid panel to be exact) because I woke up one day and couldn't open my left hand..when that test was done I was called in and told that I had positive ANA's speckled and put on meds for my hands and told I need to come back in every 6 months to have it tested to see how it progressed..Well to put it plain and simple I never went back and I quit taking my meds because it scared me...I knew they were talking serious illness here and I convinced myself that if I ignored it, that it didn't exist. This was all done by my regular Dr at that time.

Fast forward to now, I am now having some serious symptoms, both hands hurt now, I can't grip things and everyday I wake up and my hands are so swollen I can hardly bend my fingers. I have a serious redness across my face and chest..I can't sleep and when I do fall asleep I can't stay asleep yet I am always so tired...I am so hot and sometimes my face is on fire..I am constantly tired and having mood swings, depression..I am having issues to where I have to go urinate constantly, wake up having to go sometimes. I have woke up thirsty and stay thirsty all day long. I went to the eye Dr. 2 months ago because of eye pain and pressure, they did a full exam and said it was dry eye and put me on drops...Also I might mention I have Factor V Leiden heterozygous..

I have had periods of dizziness and a floating feeling off and on and heart palpitations..I have an appointment for a full physical on Monday with a new family Dr. but I am afraid they are going to say I am crazy.

Anyway I guess I just need some advice..I'm scared to be honest..I have been reading here off and on and just joined today because you all seem so nice and helpful..

Thanks in advance,
Tonyia

#2 Cheryle

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Posted 20 August 2008 - 10:57 AM

Tonyia,
I'm so glad you've joined us. I'm also glad to know you are seeing a new doctor for a physical Monday. I think you need to be honest, so that the doctor understands fully and he or she needs to know everything to give you the best treatment.

I suggest you start TWO lists, one of Symptoms with a time frame the best you can remember of when they appeared. Be sure to list all the medicines you are presently taking and the dosage.

On the other list write down all the Questions you want to ask the doctor (I'm sure others will chime in to help you think of what to ask if you need some help with that.) This way you won't forget something important to tell or ask the Doctor in case you are nervous at the time. Do you have someone to go with you? If so make another copy of the question list with space for your companion to write answers to your questions as you read you copy to the doctor.

Don't even worry that that will think you are crazy, you know your body and what is normal for you. If this doctor turns out not to be theright one... there are many more to choose from. I have had to change several of my doctors.

I'm glad you have seen an eye doctor and are getting treatment for your dry eyes. Now you can get some treatment for the other problems & hopefully feel better and sleep better soon.

Let us know how it goes Monday. I'll be thinking of you.

Cheryle

#3 Sweet

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Posted 20 August 2008 - 10:59 AM

Hi Tonyia,

Welcome to the Sclero Forums!! I'm so glad you jumped in, but sure sorry to hear about the health problems you are having. As you already know, ignoring it isn't going to make it go away and if it is something serious, then the faster you get treatment the better.

I'm no doctor of course, but Lupus popped into my head right away, due to the redness on your face and chest. I'm so glad you made an appt for a physical and I would not stop at that. I would suggest you make an appointment with a Rehumatologist. HE/SHE will NOT think you're crazy, because they deal with this stuff all the time.

Do keep us posted and good luck!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 JJ-Knitter

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Posted 20 August 2008 - 11:42 AM

Hi Tonyia,

Join the gang! The Forum is a truly great place with wonderful, caring, experienced, and informed friends to help you and send you warm hugs.

Cheryle and Sweet both gave you great advice. I've gotten so I lug lists with me every place and for every thing. When you are scared, tired, and/or not feeling at all well, the attention span is the first thing to go.

And don't worry about doctors thinking you're crazy. If you keep reading our posts, we all have worried about that, been through it, and know we are sane. It gets to be kind of a joke, honest!

Good luck with your new doctor. Let me tell you, once you get a firm diagnosis, no matter what it is, you will feel a great sense of relief. Once you know, you can learn, participate in decision making, help guide your own treatment.

Keep posting and we'll especially want to hear the results of your visit next Monday, even if it is only to tell us what tests the doctor has ordered.

Warm hugs and hope! Oh yeah, and a virtual box of chocolates too!

JJ

#5 Snowbird

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Posted 20 August 2008 - 01:14 PM

Hi Tonyia

Looks like you received lots of good guidance already...not much more I can add. I agree with the others, you need to see a good Rheumatologist...it's very important to have all of your symptoms looked at to find out what's going on with you and they run special blood work ups to do just that. I wish you good luck with your appointment and also hope you let us know what happens on Monday. Take care!
Sending good wishes your way!

#6 Sheryl

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Posted 20 August 2008 - 01:59 PM

Tonyia, excessive thirst and urination can be signs of diabetes also mood swings can occur with sugar highs and lows. When/if you have blood work done on Monday have several tests done to thoroughly rule out certain things. If you can try to work your fingers and hands and stretch them and flatten them several times daily to hopefully keep them from tightening up too much. Be aware of them when you roll over or wake up at night. Straighten all your fingers and flex them and try to keep them straight and flat. Let us know how your appointment turns out. I hope you like this doctor and I hope you have a positive visit. Having questions to ask is a great thing to do. Also, writting down anything and I mean anything that is going on so that you can let this doctor know all that is happening so that he can give a better diagnosis would be a good thing to do. Sometimes, if it isn't written down it doesn't get discussed and something important can be missed. Welcome to our/your ISN forums. I hope you learn and share things along the way, especially any coping skills. Many of us enjoy learning new ways to cope or deal with things. Best of wishes for a great office visit.
Strength and Warmth,
Sheryl

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International Scleroderma Network (ISN)

#7 Peggy

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Posted 20 August 2008 - 02:31 PM

Welcome. My advice is if you are sick that you keep going to the doctors until you find one that will listen to you, take you seriously, and will try everything they can do to figure out what it is that is wrong with you. You need to be your own best advocate and have to fight until you are heard. It took me a year of going from doctor to doctor before I found one that would finally take the time to "put the puzzle pieces together" and he wouldn't give up until we had answers. Thank heavens as some of them I know thought it was all in my head. Then come to find out that I have 6 different autoimmune diseases and like they say I am an "autoimmune disaster". If I had given up who knows where I'd be now. I wish you good luck and please keep us posted on how you are doing and what you find out.

Warm hugs,

Peggy

#8 Tonyia

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Posted 20 August 2008 - 02:48 PM

Thanks so much everyone for your replies. I am trying very hard to be brave but I will say that when they told me those few years ago that something was wrong I fell completely apart for 3 days..my daughter who is now 7 was just turning 3 and all I could think of was that I was not going to see her grow up. I also have a 17 yr old son and 2 step sons ages 13 and 17.

I had a test for my sugar etc about 4 months ago and also had a cholesterol test done which is elevated (both parents are gone from heart related illness). My FVL was diagnosed when I had my daughter and spontaneously threw 3 blood clots 5 months after she was born. I was scared when I went for that diagnoses too, they took 9 tubes of blood that day and it took 3 weeks to get the results back, I was on pins and needles the whole time.

I just wish it was an easy thing to find out, I think I could deal a lot better if it weren't so many questions. Like where did it come from and why me..etc..I will say that I am 4 months smoke free and that is a big deal for me so maybe that has to do with the weight gain although I have not changed my diet all that much.

Thanks again you guys,
I really appreciate it!!!

Tonyia

#9 smurfette

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Posted 20 August 2008 - 04:42 PM

Wow you seem to be feeling so overwhelmed. We all feel that way until we get a diagnosis and a clear treatment plan. Once you have a true assessment of your condition or conditions and know what meds you need and behavioral changes that are needed to help you feel better you will be much better off. Everything seems so out of control when you are trying to get a handle on things and that is why we are here. We can't give you medical advice but we can tell you we all understand what it is like to be in your shoes. We can tell you that you are not alone and we are here for support.
First things first. You need to find a doctor that you can work with comfortably. The thirst may, as others have said, indicate diabetes. There are other conditions that you described also. When I have so much to deal with I find that I need to make lists and get organized. Cheryle suggested you do that and I know that is the way to go. The why me and how did I get this are better left to other times - they are philosophical questions and we can discuss them on the forum. Doctors deal with symptoms, diagnoses and how to fix things and right now that is what you need. I suggest you stick to that kind of question. That will help you to feel like you are starting to have some control over things.
Next bring someone who can take notes with you to the doctor with you. You have tons of questions and you need someone to write the answers down and help you stay on track. You do not want to get so busy taking notes that you don't get the information you need. You will probably have to take some tests and you want to know what each test is and why you need to take it. After all the tets results are in you will meet with the doctor again and map out a treatment plan. The tests are tools - do not stress out while you are waiting for the results - of course that seems easy to say and is hard to do - but Stress is not good for anything. It contributes nothing positive to you and can only make any of your conditions worse.
You can't get better by not dealing with your health issues. Your children need you and they need you to be as healthy as you can be, so no more ignoring and no more skipping the meds. If you do get meds that don't agree with you, you have to talk to your doctor and find some that do.
If you are approaching, heart palpitations and all kinds of weird and fun symptoms are in store for you. Have you gotten to that age range yet? If you have and you have a male physician, let me tell you, you are describing the exact symptoms that my friends and I discuss all the time. See your gyn., but I may be welcoming you to the sisterhood of the hot flashes.
Lastly, and I do run on don't I, I have high cholesterol, and I am on meds for it and mine is being managed medically just beautifully. The statins and other medical and dietary changes are very effective. Your doctor will certianly be abl to address that issue also. Do not forget to bring up your concerns about your family history.
You will feel better. We are here for you. I hope that it happens soon and that you feel more in control. Welcome to the board and know that everyone here is pulling for you.
Smurfette

Chocolate, It isn't just for breakfast anymore!

#10 canon

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Posted 20 August 2008 - 05:07 PM

Welcome Tonyia,

You sound like you have a handle on things now even if it doesn't feel that way to you. A Rheumatologist is the best place to start. She/he should coordinate things for you such as treatments and other Doctors, should you need them.

There is alot of imformation on this site that will help you or direct you to where information can be found. The support here is also wonderful. I am a newbie to this forum too.

Wish you speedy answers.

Canon
A happy heart is good medicine.

#11 truman

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Posted 20 August 2008 - 05:53 PM

Tonyia:

Wow, your emotions are bringing back mine from years ago. I too fled the doctor scene at the hint of a diagnosis. Some here are frustrated and upset because doctors not coming to a conclusion of a diagnosis; I was frustrated and upset that they did. I cried for the longest time and then "out of sight, out of mind" for 16 years until I couldn't ignore it any longer. I had your same fears; my children were 10 and 14 at the time, and I was divorced and raising them alone. The final realization came with the amputation of the large toe due to Raynauds last November. I am still going to a wound care center to heal this operation, but things are going nicely. I will say that now I devotedly see my Rheumatologist every three months. He has put me on a schedule of medication that is finally working and making my life livable again.

I agree with everything these generous and caring posters have written, but must stress as well, see a Rheumatologist. This is the starting point for a doctor and future doctor referrals.

My first thought was Lupus as Sweet had stated, but that generally is a "butterfly" type redness pattern over the bridge of the nose. RA and thyroid problems are what comes to my mind. Take your physical on Monday, but make an appointment this week to see a Rheumatologist as well. When and if you do, take a copy of any present blood work and medication list with dosages listed. Include any OTC meds as well. They can be important as they may or may not be interacting with scrip meds and the doctor needs to know that.

Keep us posted and remember, always remember, you are not alone. We're here and you have many options to reach us via this forum, the forum PM or our personal email.

You will come out of this living a great life. You just need to get you on a regime of a proper doctor and proper medication.
Tru

It is what it is...........

#12 razz

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Posted 21 August 2008 - 03:36 AM

Tonyia,

First I want to say Welcome to the ISN family! You sound like you have a lot of symptoms going on, some new and some you've had. Everyone handles the first signs that something is wrong differently. Fortuntately you've taken the steps to make a doctor's appointment and moved on from the denial.

We all can relate to you in some way. Some of us are mothers with children, or have elderly parents that depended on us for strength and support. People who looked up to us and came away knowing everything was safe and sound. Now, we've come face to face with changes in our bodies and we don't feel the same or look the same. I and others had the strength to move refrigerators, televisions, furniture or perform cleaning marathons from dawn to dusk, making meals in between. That's changed and we've helped each other along the way.

I went through denial too. I had two young daughters (10 and 12) at the time when I got diagnosed. I was (un)lucky to get diagnosed at my first rheumatologist appointment. She knew within minutes after one test that I had scleroderma. What we didn't know was what type or how affected I would be. Unanswered questions. It was difficult to accept especially because I still looked normal. I had developed pain in my hands and thought it was arthritis. I just knew this had to be a mistake. Besides who ever heard of scleroderma? I hadn't. Denial comes in handy because if we ignore the problem, it doesn't exist. Not a good idea. It's okay to put the negative thoughts and fears on the back burner to deal with at the doctor's office. I understand how important it is to get through your day and spend quality time with your family. That is so very important.

I am glad you joined our forum for answers to your questions. We have so many talented people here. What I like the most is for every person that joins us I've learned something new. The questions and responses are always interesting.

Please let us update us on your appointment.


We're here for you,
Razz
Live well, Laugh often, Love much

#13 Tonyia

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Posted 21 August 2008 - 05:08 AM

Thank you all so much!

I will for sure update everyone after my Monday appointment and make an appointment to see a Rheumatologist. I've known for some time that I needed to go see one, that is what my initial Dr. told me to do and of course I ran from it as fast as I could. I just feel so tired and everything upsets me because I don't know why I feel so bad. My fingers/hands are hurting a lot today which also upsets me..I want so bad to be 100% again and I know that may never happen.

#14 Nina

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Posted 21 August 2008 - 03:20 PM

Tonyia: So glad you are here ~ best place you could possibly be at this point in your life. I tried to post a few minutes ago, hit the wrong button and off my message went!
Anyway, know that everyone here cares, understands, and pretty much knows where you are coming from. Nothing you could say would shock any one of these wonderful compassionate people.
Things may not ever be the same, but educate yourself and be proud that you have taken the first step toward caring for your own health.
Much love,
Nina (DE)

#15 Tonyia

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Posted 25 August 2008 - 10:29 AM

I went to my appointment today and they are running all sorts of tests, blood work etc.. :P .The are checking my ANA's, thyroid etc...I am supposed to go back next week for results..just wanted to update you guys.. B)

#16 Snowbird

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Posted 25 August 2008 - 01:36 PM

Hi Tonyia

I hope you feel some tid bit of relief for all the tests they are running on you in amongst your fears. I know it's really hard, but also try not to scare yourself silly while you wait....so in other words, try not to fret at least until you know for sure that there's something to fret about ok (I know too well easier said than done :o but...). Keep asking your questions too, there's always someone here who can help. I hope you stay in touch and keep us posted on your results next week. Take care!
Sending good wishes your way!

#17 Sheryl

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Posted 25 August 2008 - 02:03 PM

Tonyia, thanks for letting us know you went to your appointment and didn't flee. Your doctor will give you results and give you possible options on different medications that can help ease pain or swelling or possibly rectify some of your problems. If you have different autoimmune problems doctors work on helping you with the symptoms. We can't make the disease's go away and we don't know what has caused us in particular to get these diseases. We can learn to cope and go on and go forward and help each other on our down days, weeks or months. Do keep us informed and get your thoughts together that you can get through what ever is thrown in your lap.
Strength and Warmth,
Sheryl

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#18 JJ-Knitter

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Posted 25 August 2008 - 05:10 PM

Good for you! Going to the doctor is the first and biggest step. Did you get a chance to make a rheumatologist appointment or are you waiting till the test results come back?

We're all cheering for you!

JJ

#19 Peggy

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Posted 26 August 2008 - 07:37 AM

I'm glad to hear you went to the doctor. When you go back you might want to take someone with you so you have another set of "ears" to hear all the doctor has to say. I was by myself for the first time when I got my bad news and I know once she said that I had sclero and not a very good outlook that I didn't hear the rest. I was devastated and so overwhelmed I didn't even ask questions. This way someone can also be taking notes as they sometimes throw so much at you it's amost too much. Good luck and let us know how it goes.

Warm hugs,

Peggy

#20 bowbec

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Posted 07 September 2008 - 10:09 AM

Tonyia,

Any results from the tests, blood work, checking ANA's, thyroid etc...
Last we heard you were supposed to go back for results...
Hope all is well.


Bless!
Becky
Diagnosed with Diffuse Systemic Scleroderma May 2005
Raynaud's, GI, esophagus, skin and lung involvement.