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View Full Version : Diagnosed Today, Symptoms For At Least 6 Years



GeoKasher
07-12-2011, 05:23 PM
Good evening! I just found this forum tonight after getting the news today that I have Lupus.

I have had symptoms since at least 2005 and finally found a doctor last month that would take me seriously and listen to what I was saying. Bloodwork and a 24-hour urine test ruled out an adrenal tumor and showed elevated ANA levels.

My flare ups seem to start with massive weight gain (40 pounds in 3 months both times) with fluid retention, leading to pitting edema. My blood pressure fluctuates wildly from too low to, at one doctor's visit, 220/188! I have developed a malar rash over my cheeks and nose so that it looks like I'm always sunburned. Last week I developed a discoid rash on my chest in the neckline area. I often have bouts of severe fatigue and intermittent elbow pain. I also experience very frequent heart palpitations.

I am scheduled for an echocardiogram tomorrow and will be wearing a harness for 24 hours next week to document what is going on with my heart. I have an appointment with a dermatologist next month (soonest I could get in). I am just relieved to finally have a diagnosis and know what I'm dealing with!

How long do the discoid rashes tend to last? This is rather embarrassing since it's high enough that none of my shirts cover it. It's too warm to wear a turtleneck. LOL

mrstjscott
07-12-2011, 05:29 PM
Welcome to WHL GeoKasher. You have found a great group of people to share your (for lack of better words) pain, anger, frustration, etc. This is also a great site to gain information about Lupus that many of our doctors have been in the dark about.
I have found this group of wonderful people to be non-judgmental. They have had several opportunities to judge my mood swings, craziness, and utter saddness/depression, but instead of judging me, they have comforted me with their kind words of compassion, love and concern. I love this group so much because they KNOW what we go through. They are not guessing or giving their opinions. They actually KNOW WHAT THEY ARE TALKING ABOUT.
So, GeoKasher, I welcome you to WHL again. (I am from Phila, PA).

Elo
07-12-2011, 05:40 PM
Welcome to WHL!!
I can't tell you about your discoid rash, sorry ): I'm not yet diagnosed (besides being told that I have an AI disease), and I don't have any skin involvement. But I do know your relief after finding a diagnosis :)
I'm sorry that you have this disease... it's a hard one. But at least you've found us - the people here are great to whine to and get info from, believe me (;
I'm glad to hear that you're getting everything together with seeing all the right specialists! Do you have a rhuematologist you see as well?
Doctors can be so...well..stupid sometimes. I went through 4 of them myself, and that's nothing compared to so many others. I'm glad you finally found a good one who listens!
Welcome again - and i'm sorry I couldn't be of more help with your questions.

Manderson
07-12-2011, 05:58 PM
I also am undx'ed. I have rashes on my hands and inside of forearms. Like you I have had weight gain - 12+ lbs in one year; edema, joint aches and burning. My feet are really involved as well. Feels like my toes are on fire. I have a very light malar rash - if indeed that is what it is.

Welcome!

CWARD
07-12-2011, 07:17 PM
I am not a dr...but have a lot of experience with a daughterand myself with systemic lupus.....first listen toyour body....second dont panic.....i hope part of your care is seeing a kidney speciaist.....kidneys issues can cause heart issues ....lung issues however......sometimes none of the above are an issue! Lupus affects everyone so differently.....my daughter gains weight in a flare and thats before she is put back on steroids.....rashes last with the flare as far as my experience.....when flare under control it ususally dimineshes......i hesitate to say much because although lupus has certain symtoms it really does vary..... My discoid rash also on my chest has never totally gone away.......to be honest after a while it becomes theleastof my worries....hang in there and be positive.....this disease can be managed

GeoKasher
07-12-2011, 07:32 PM
Thank you so much for all the replies, everyone. I am still digesting all that I have read so far today about Lupus.

CWard...Yes, I forgot to mention that I have an appointment with a kidney specialist at the end of next month also.

Manderson...I am grateful that you mentioned that you also gain weight in a flare. The first time this happened my doctor at that time told me I just needed to quit eating so much. I think it would be impossible to eat so much to gain 40 pounds in 3 months! He never even checked my legs even though I complained of feeling swollen and tight all over. My husband finally went with me and pointed out to him that I had pitting edema. He finally began ordering tests then, but never uncovered anything. It was SO frustrating. I finally gave up and just quit going to the doctor and then must be the flare ended because the weight started coming back off and I felt "normal" again.

Elo...have not been referred to a rheumatologist, as yet. This doctor is brand new to me and her main concern right now is my heart. My previous doctor never seemed to hear the palpitations, yet this doctor heard them several times during my very first visit. She wants to make sure that damage has not been done since it has been years that this has been going on.

mrstjscott...Another fellow PA'er! I'm from WAY up north, near the NY state border. In fact, my husband works in NY state and my doctor is over the border there also.

Thank you all again for your warm welcomes!

tgal
07-12-2011, 08:08 PM
I wanted to drop in and welcome you to WHL! Although I am sad that you need us I am so glad that we can be here for you. Your story sounds a lot like mine. I gained about 40 lbs in a 3 month period and then the steroids just made it worse. My blood pressure goes up in the 200s as well. Freaks everyone out. The worst part for you is over though. There is a weird kind of relief that comes with having a diagnosis. You feel somewhat vindicated by figuring out that you are NOT nuts!

Please make yourself at home. THere are wonderful threads with fabulous information. If you have some specific questions feel free to ask! Welcome to the WHL famiy and I look forward to getting to know you!

steve.b
07-12-2011, 11:14 PM
hi and welcome

lovedbyHim
07-13-2011, 03:02 AM
Hello Geo welcome to WHL I know you will find answers & validation here.

~LUVMYFLOWERS~
07-13-2011, 04:54 AM
Hello, And welcome to Whl! Im so glad you have joined.

debbie-b
07-13-2011, 07:42 AM
Hi Geo,

Welcome to WHL. As you have already seen, this is an awesome forum.
I am sorry you had to join this forum, because you have Lupus, but I am glad you are a new member in our family.
If you have any questions, comments or anything, we are here for you.

Debbie

Peridot20_Gem
07-13-2011, 12:47 PM
Good evening! I just found this forum tonight after getting the news today that I have Lupus.

I have had symptoms since at least 2005 and finally found a doctor last month that would take me seriously and listen to what I was saying. Bloodwork and a 24-hour urine test ruled out an adrenal tumor and showed elevated ANA levels.

My flare ups seem to start with massive weight gain (40 pounds in 3 months both times) with fluid retention, leading to pitting edema. My blood pressure fluctuates wildly from too low to, at one doctor's visit, 220/188! I have developed a malar rash over my cheeks and nose so that it looks like I'm always sunburned. Last week I developed a discoid rash on my chest in the neckline area. I often have bouts of severe fatigue and intermittent elbow pain. I also experience very frequent heart palpitations.

I am scheduled for an echocardiogram tomorrow and will be wearing a harness for 24 hours next week to document what is going on with my heart. I have an appointment with a dermatologist next month (soonest I could get in). I am just relieved to finally have a diagnosis and know what I'm dealing with!

How long do the discoid rashes tend to last? This is rather embarrassing since it's high enough that none of my shirts cover it. It's too warm to wear a turtleneck. LOLHi Geo,

Welcome to our lovely family at WHL who will help best we can and there's so many threads to venture through concerning the Disease to learn from, as somtimes issues arise where we have'nt got a clue what it maybe but there's always someone ready to help.

Refering the weight gain ask to be checked out regarding your thyroid glands, as i have thyroid trouble and that can make you either lose weight or gain it and this is involved with Lupus...the malar rash (Butterfly rash) i had burning red and so sore mine took a while to move and i also have discoid Lupus and i am pleased your seeing a Dermo specialist as i'm under a great one and he run bloods on me to find out what i had which was also psoriasis and he put me on steriod based creams, they're excellent for removing rashes but you need a 6mths break regular as they're also an aging process but mainly to the face.
The bouts of fatigue comes regular with Lupus and i also suffer the elbow pain, which was diagnosed wrongly for tennis elbow, it's quite painful and palpations can also happen that can come on through anxiety also but i wish you all the best with your appointment tomorrow.

A flare can last from a few days going into weeks plus months it's according to how active the lupus is.

Hugs your way Terry xxxxx

GeoKasher
07-14-2011, 07:18 PM
Hi Geo,

Refering the weight gain ask to be checked out regarding your thyroid glands, as i have thyroid trouble and that can make you either lose weight or gain it and this is involved with Lupus...the malar rash (Butterfly rash) i had burning red and so sore mine took a while to move and i also have discoid Lupus and i am pleased your seeing a Dermo specialist as i'm under a great one and he run bloods on me to find out what i had which was also psoriasis and he put me on steriod based creams, they're excellent for removing rashes but you need a 6mths break regular as they're also an aging process but mainly to the face.
The bouts of fatigue comes regular with Lupus and i also suffer the elbow pain, which was diagnosed wrongly for tennis elbow, it's quite painful and palpations can also happen that can come on through anxiety also but i wish you all the best with your appointment tomorrow.

A flare can last from a few days going into weeks plus months it's according to how active the lupus is.

Hugs your way Terry xxxxx
Thanks, Terry. I have had Hashimoto's for the past 21 years and have been on synthroid since then. I have my TSH levels checked regularly.

I did get a call from the doctor's office today and she said that my echocardiogram came back "pretty good" and to make sure that I keep my appointment for the halter monitor next week.

Peridot20_Gem
07-15-2011, 06:39 AM
Thanks, Terry. I have had Hashimoto's for the past 21 years and have been on synthroid since then. I have my TSH levels checked regularly.

I did get a call from the doctor's office today and she said that my echocardiogram came back "pretty good" and to make sure that I keep my appointment for the halter monitor next week.Hi Geo,

So at least you know about your thyroid as alot of women don't and these can cause major issues, concerning your health and weight and i have my levels besides other bloods done every 6mths my GP is on the ball with me.

Nice news about your echocardiogram but like they said still attend your appointment mate.

((Hugs Terry)) xxx

kala
07-15-2011, 10:00 AM
Hi Geo, I am a newbie too, but have been dealing with mixed connective tissue disease (2005), positive lupus skin biopsy (2007), secondary Sjogren's syndrome diagnoses (2008). All have similar symptoms, and no cures, but are managable as long as you don't wait to call your docs. that's my problem, I wait till the pain is too bad. In March I couldn't tolerate the joint pain and requested I be allowed to go back on prednisone (5 mg). Doc said no problem. Still on it. But I also started a trial drug thru Achieve Clincial Research. It is a blind study, and I really can't tell that it is working after 2 months. Strong pain meds, like Ultram, don't really help, so I stick with ibuprofen & tylenol.
I too have skin involvement, which is the largest organ in your body. Be sure to wear lots of sunscreen, stay out of the sun and flouresant lighting, when possible. It does change your life, but they will do more damage than just a rash. I have gotten a very dark tint on my car windows this year and it has help tremendously.
Join a support group! If there isn't one in your area, start one! contact to find one is: www.lupus.org
Let me hear from you!
KALA

tgal
07-15-2011, 01:23 PM
Hi Geo, I am a newbie too, but have been dealing with mixed connective tissue disease (2005), positive lupus skin biopsy (2007), secondary Sjogren's syndrome diagnoses (2008). All have similar symptoms, and no cures, but are managable as long as you don't wait to call your docs. that's my problem, I wait till the pain is too bad. In March I couldn't tolerate the joint pain and requested I be allowed to go back on prednisone (5 mg). Doc said no problem. Still on it. But I also started a trial drug thru Achieve Clincial Research. It is a blind study, and I really can't tell that it is working after 2 months. Strong pain meds, like Ultram, don't really help, so I stick with ibuprofen & tylenol.
I too have skin involvement, which is the largest organ in your body. Be sure to wear lots of sunscreen, stay out of the sun and flouresant lighting, when possible. It does change your life, but they will do more damage than just a rash. I have gotten a very dark tint on my car windows this year and it has help tremendously.
Join a support group! If there isn't one in your area, start one! contact to find one is: www.lupus.org
Let me hear from you!
KALA

Hi Kala! Welcome to WHL. That is great advice that you just gave. In many ways it doesn't matter what name you give these AI diseases some of the issues are exactly the same. I am really glad that you have joined us. I look forward to getting to know you and welcome to the WHL family!

steve.b
07-15-2011, 08:20 PM
hi kala, and welcome.
i saw your other thread.......
nice to see you have started a support group in your area.

i like this group..... we are a world wide support group
hope you stay with us.

Peridot20_Gem
07-16-2011, 01:41 AM
Hi Geo, I am a newbie too, but have been dealing with mixed connective tissue disease (2005), positive lupus skin biopsy (2007), secondary Sjogren's syndrome diagnoses (2008). All have similar symptoms, and no cures, but are managable as long as you don't wait to call your docs. that's my problem, I wait till the pain is too bad. In March I couldn't tolerate the joint pain and requested I be allowed to go back on prednisone (5 mg). Doc said no problem. Still on it. But I also started a trial drug thru Achieve Clincial Research. It is a blind study, and I really can't tell that it is working after 2 months. Strong pain meds, like Ultram, don't really help, so I stick with ibuprofen & tylenol.
I too have skin involvement, which is the largest organ in your body. Be sure to wear lots of sunscreen, stay out of the sun and flouresant lighting, when possible. It does change your life, but they will do more damage than just a rash. I have gotten a very dark tint on my car windows this year and it has help tremendously.
Join a support group! If there isn't one in your area, start one! contact to find one is: www.lupus.org
Let me hear from you!
KALAHi Kala,

Welcome to WHL and nice to have you with us and i hope the threads on the site help you also in many ways and you sound so positive with Lupus the way your explaining yourself as if you've excepted it well.
I've got A1 Diseases like yourself overlapping Autoimmune Diseases and i find it all a nightmare trying to cope at times with different issues, it can get you down sometimes.

I wish you the best of luck concerning the clinical research your on and for painkillers they told me up to 4000mg a day of paracetamol besides my plaquenil i take.

Hugs Terry xxx

Peridot20_Gem
07-16-2011, 01:43 AM
Hi Geo,

I hope your feeling fine since you joined and that your days as pain free as possible...keep we updated please.

Love Terry xxx