Discussions By Condition: Other Conditions

Adrenal Mass

Posted In: Other Conditions 37 Replies
  • Posted By: Anonymous
  • November 6, 2006
  • 04:16 AM

Hi I'm new to this. Just a short description and a couple of questions if I could. 2 years ago I was found to have a 3cm mass on my right adrenal gland. This was found by accident. Anyway, it has explained a lot of symptoms that I have been suffering for a long long time and was always put down to my weight. The doctor I was seeing at the time didnt seem too purturbed by it. He said, "It's nothing to worry about, go home and lose weight, you'll feel better". I did have a biopsy but I couldnt get a straight answer. I have since relocated towns and a recent CT has shown that it has grown to 3.5 x 3.4 x 3.4cm and now has irregular edges. I have an appointment to see a surgeon next month. What I would like to know is what size is considered dangerous as far as cancer goes? Cancer is very prevelant in my family. Another question is does it have anything to do with the fact that I was also diagnosed with Polycystic Ovaries 10 years ago? I would appreciate any answers I could get and also any clues on what sort of questions I should be asking my surgeon when I see him

Rissy

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37 Replies:

  • what kind of symptoms were you having? How are you now?
    miserableMOE 52 Replies
    • January 22, 2007
    • 04:32 PM
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  • Hi I still have the tumour. I went to see the specialist and he said that I might have Cushings disease. he did a blood test where I had to take tablets at 11pm and then more blood in the morning. I went back to see him a month later and he said that they came back normal. He said that he could do another test to rule it out for sure but didnt think it was worth it. when i asked him, what next? He became hostile and said "I dont know, go back to your GP". Then he said, "I dont know what's making you feel like a dog with malaria, go back to your GP". He just wasn't interested. He decided that the tumour at 3.5cm wasn't big enough to worry about until it became cancerous but he didnt want to biopsy for another 12 months. I can tell you, I have had it up to my ears with doctor's attitudes. Sorry to blather on, I am just so tired of feeling unwell, I have felt this way (getting worse as the years go on) for at least the last 10 years and the tumour was found 2 years ago. You asked for my symptoms, I'll list them for you. If you could give me some advice on how to handle this and where to go from here, I would be grateful. 1. Facial, back, chest, stomach hair growing (started around 25yrs old)2. Dizziness on standing, head feels like it's swelling & sometimes leads to vision disturbance which lasts for about 20mins, dizziness for about 2-3mins3. Bruises appear from nowhere and take weeks to disappear4. Sores (like boils) all the time, i have scars all over my body, gets worse just before mens. Anibiotics and strongest penicillin dont work. This also started at about 25yrs old5. Hair on my head starting to thin out6. Pain in my right side just at the bottom of my ribs7. Pain in my ovaries (I have been told i have PCOS, have had one severe cyst & fibroids)8. Can't eat a normal meal anymore. Eg: a tub of yoghurt can make me feel like I have had a 3-course meal and sits like a brick in my belly for ages, very uncomfortable.9. Joint pain10. Sleep disturbances11. Sweat heaps12. Mood swings13. Am starting to have periods of confusion, I know what I am trying to say when I speak but the wrong or opposite words invariably come out of my mouth. I know I sound like a hypochondriac but I really just want to feel well. I have followed doctors orders and lost weight - nearly 30 kilos so far. Another concern is that the majority of my family have passed on from Cancer. I don't really want to wait for this thing to be cancer Thanks for your patienceRissy
    Anonymous 42,789 Replies
    • January 25, 2007
    • 07:38 AM
    • 0
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  • First of all Rissy, I do not think you sound like a hypercondriac! Trust me I have a multitude of health issues and am in costant agony so I feel for you. The reason your thread caught my eye is my Dr did bloodwork on me in late Oct 2006 after I had a severe kidney infection. Up until that point (had kid inf. my whole life due to kid disease) I kept going to Doc with weird new sypmtoms seemed monthly. Started migraines 1 st time in life, daily headaches. Started sweating episode which I was told pre-menopause even though I am 34. And by sweating episodes, these suckers aren't hot flashes, they last 30 min to 1 1/2 hour. Blod pressure was up at every visit, was told due to pain in my back from 2 herniated discs. They just seem to have a quick answer for everything. Anyway this blood came back with my NOREPINEPHRINE level at 600. Should be 0-399. It was then suggested that I may have pheochromocytoma a tumor on my adrenal gland. ???? Where did this come from? Some of the symptoms are sweating, headaches and high blood pressure! Go figure. I was in ER last night. Now I am having all the previous symptoms plus: rapid heart beat, anxiety, very high blood p, blood in urine, loss of consciesness, had 3 periods in Nov but none since, internal shaking, severe diarrhea, bad abdominal pains, flank pain, muscles ache, cannot eat real food without puking, but am craving sugar and can eat candy. I went from 115 lbs in summer to 138lbs now! I feel like my soul leaves my body for brief periods of time. SO, what does this mean? They really think now I have an adrenal mass tumor. I see an Endocrinologist on Moday the 30th. Sr. has been trying to get me a PET scan but ins wont cover it (gotta love them) And let me tell you, I do not care how big of a pain in the **s I am going to be to these Dr's because this is MY life! Somebody better get a ball rolling soon. Riss, DO NOT let anyone but yourself take control of your health! Unfortunatly, we have to be our own DR.'s . Check out http://p078.ezboard.com/bpheochromocytomasupportboard or try http://www.pheochromocytoma.org/sys-tmpl/door/ This condition is all about these masses and tumors on the adrenal glands btu sometimes found other places too. I really hope this helps you in some way. We gotta look out for ourselves and each other because noone else will! Best of luck to you and post me anytime. Take care
    miserableMOE 52 Replies
    • January 25, 2007
    • 10:34 PM
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  • Thanks for your reply MOE I'm so sorry for all that you are going through. I hope you have some resolution and relief very soon. I'll be praying for you. As for myself, I have decided for the present to give doctors a miss all together. I dont think I can go through this fight right now for the third time in three years. The health system is so slow here that it would take weeks/months just to get through another round of tests etc unless you are an emergency case. I don't think I can physically or mentally/emotionally cope with that. I am working on my own pain management and as for the other symptoms, I have lived with them for so long now....I know that this is giving up etc but right now I just cant do it again, I don't have the strenth.I will pray for success with your docs Moe and for your speedy road to health. Stay in touch Rissy
    Anonymous 42,789 Replies
    • February 1, 2007
    • 00:06 AM
    • 0
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  • Sorry to hear things aren't better. Health system slow as molasses here in PA too. Three Dr.'s in 3 months and I still am nowhere close to knowing what is going on. I went to an Endocrinologist yesterday and guess what.......I am going to do more blood tests and 2 more 24 hour urines. Who knew? Did you get to check out the pheo. website I sent you? The one with the suport group and message boards? It has been helping me not feel as "crazy" as all those people have the same symptoms. If you haven't, check it out and read some posts. Maybe even post your story there and get some advice from someone more experienced. It helps to be in a spot where alot of people acn identify with what you are going through. Who knows, maybe someone there may have a suggestion you haven't heard yet. Hope to see you on the Pheo board!:) Take care and Thanks for the prayers. Right back at you!!
    miserableMOE 52 Replies
    • February 1, 2007
    • 00:41 AM
    • 0
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  • I have a 4.5cm adrenal mass on my right kidney. Dr has not given me a straight answer as to what exactly it is. Ive had ultrasound,catscan and ultrasound, 24hr urine, now i will go for a 2hr resting blood test. they said at first it was a cyst, then a tumor, now a adrenal mass. im so confused. i am working with the nurse praticinor at the dr office. she is so wishy washie.i have an apt 4/24 will get it straight from the doctor then. will go for a second opinion too. i have high blood pressure, and cancer ru;ns in my family.so glad you people are here to talk to.songbird..
    Anonymous 42,789 Replies Flag this Response
  • Rissy, I have almost the same symptoms you have. I recently have been very symptomatic and thought that I had a severe sinus infection because my face is swelling bad at times it feels like my whole head is swelling. My neck and jaws get really stiff. ( been to 3 ENTs and had 2 sinus CTs done and an allergist to rule that out) I am having slight seizures and muscle twitches ( I started this after I went off hormones so I thought that was the problem. I am so nauseated and have no apetite so I have lost over 40lbs in the past 6 months. My concentration and memory is very poor.(again I attributed this to going of HRT). I have a constat pain in the bottom of my right rib cage and diarrea off and on. I had a CT scan done last year and it revealed an adrenal tumor on my left kidney and I was told it was not causing me any problems. My skin was flushing way before I had my hysterectomy last year. My b/P is bouncing all over and I have chole level of 225. I am so very dizzy. I worry about some of these symptoms because some can be from liver problems and I have Hep B core antibody as I was stuck with a dirty needle years ago. ( I am in the medical profession) My liver function test come back fine but thats not always a sure thing. All other test including ANA, Sed rate, all thyroid test and regular blood test come back fine. I am getting ready to do a 24hour urine to check my for Catacholemines and other things related to the adrenal tumor. I had a long talk with my doctor today and he said we will start there.
    fluffyv 38 Replies Flag this Response
  • I too had an adrenal mass it was found by accident in my right adrenal gland. I was very sick and one dr after another told me it was nothing. I did a lot of research on this and found it is called the 10% tumor..because 10% of people have them and only 10% of them people that have them are they cancer. The tumor does cause problems even if it isn't a functioning tumor. I had my right adrenal gland removed two years ago. I felt great for about 6 weeks after. Slowly the symptoms came back. Fatigue, headache, upset stomach all the time. switch between diarreah and constipation, dehydration and recently started with anxiety, heart palpatations, bp up to 149/96 when normal for me is 90/70 dizzy spells, low blood sugar, and low an behold low potassium. plus a vitamin D deficency, I have been monitored since my surgery to check potassium as first indication my other adrenal gland was starting to fail. I just had more blood test run and hope and cross my fingers that it isn't failing. You need to find a dr that is educated about adrenal masses first of all I went to 2 endos, Many dr's, and finally my breast dr had an associate in her office that does specialize in removal of adrenal glands and when I seen him he said that the tumor had to come out before it reached 5cm. because at that size the insurance company's consider it cancer even if it isn't. Just because of the size. Mine was 4.9cm when removed. I fought with dr after dr for 4 years since they first found my mass everyone saying oh it is not a big deal but we should monitor it....My thought was if it wasn't such a big deal why then do you need to monitor it...hmmm... Please don't give up You are not a hypocondreact and nobody knows your body better then you...When you have your blood test done ask for the results not just that they are in normal range but specifily the numbers and do your own reasearch. Even though they are in normal range does not mean it is normal for your body. watch and see if your numbers are changing over time. my tsh went from 2.3 now down to .57 that is not normal I have all the symptoms of Hoshimotos disease(sorry not sure spelling) but they won't treat because my Tsh is in normal range... You can go into adrenal fatiuge before you hit adrenal failure but around here they don't want to hear that. they say it isn't bad enough to treat. Just once I would love one of them dr's that say it isn't bad enough to treat to just live my life for a day and see if they feel the same way after that. I wish you all the luck but Please don't give up its your body and you know how you feel. Don't let them make you give up on yourself.
    Sick_N_Tired 12 Replies Flag this Response
  • Im not sure how big mine is. I never asked. I was just told it was never a problem so I never worried about it. My biggest problem right now is, I have severe fluid retention in my face, and at times it feels like my whole head is swelling. My jaws get so stiff, I can barely move them. I know it is caused by fluid retention because when I lay on my back, it drips down my nose and my jaws are no longer stiff. And when I get up in the morning, the facial swelling isnt that bad. The fluid retention is mainly under my eyes and sits on my cheek bones, and down the left side of my face mostly but when it gets real bad, its all over. The problem with taking a diurectic is Im so dry already, that in trying to relieve me of my fluid retention, the rest of my body suffers greatly and then it doesnt take away all of the fluid retention. Have you ever heard of this? I do have two root canals over on the left side and right before all of this swelling started, my lower tooth was killing me and I was going to have it removed but then it stopped. But it has been hurting me off and on since and I think I will have it removed anyway. I have been to the denist and the oral surgeon and they both say that it could not be causing my fluid retention. Its just so funny that most of my fluid retention in on that left side.
    fluffyv 38 Replies Flag this Response
  • I just did my 24 hour urine for catacholmines. I hope this tells me something. I also had my bad root canal pulled. The tooth was fractured all the way down but the oral surgeon says this is not what is causing the swelling in my face. Im starting to get worried about this adrenal mass now because 2 years ago I weighed a lot and now Ive lost a lot of weight. Its very scary. I have an appt with an Endo on the 19th. Sick and Tired: how are you feeling? Did you have any problems when they removed your tumor?
    fluffyv 38 Replies Flag this Response
  • I am very glad you decided to make an appointment with an endo....I think that was a really good move. First did I have any problems when I had mine removed? No. Mine was my Right adrenal gland. the risk is that it is fed by a major artery...I had a wonderfull surgen that happens to do a lot of these. I also had my gallblader removed at the same time because I was having problems with that. After surgery I had very little pain from the removel of the adrenal gland nothing 800mg of advil didnt fix. :) after I felt really good for a bit but symptoms came back slowly. For most part I can live with most of them. Lately at least the panic attacks seem to have stoped at least thats what I thought till my dr told me the numbness in my mouth and hands was from hypervntilation and that if I was hyperventilating then I don't have the panic attacks under control. No other symptoms of panic at all just aprently forgot how to breath..lol. My bp still up and down, my potassium levels are back to normal. I feel a lot better then I was but still feeling something is off. The hyperventilating is a bit odd I think. when I have that I start to realize I feel out of breath and then start to take slow deep breaths and most the numbness stoped but still getting short of breath for no reason. I know the dr said anxiety but I dont' think that is what it is. I am suppose to have a mastectomy in a few months and dr thinks thats what is bothering me but honestly it isn't. I will have reconstruction after and be better then new..lol. but I suppose he is looking for any reason to blame anxiety becuse he don't know what it is. I never had anxiety till 6weeks ago before I found out about the mastectomy. So I know that isn't it. I wish you the best at the endo's and hope your test results reveal something to make a diagnosis. Let me know how your doing. Good Luck and God bless. Take care and Don't give up :D
    Sick_N_Tired 12 Replies Flag this Response
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  • Dear Sick and Tired and songbird and rizzy and fluffy--I totally relate and wish were were in a chat room! I started feeling bad 6 years ago and they found a 2 cm tumor on my adrenal gland and said don't worry. Then my cortisol was high and they said Cushings. Then it was normal. Then I tested positive for pheochromocytoma. But my blood levels weren't sky high so they said I should have an MIBG. IT lit up on the left instead of the right and I had a lto fo different opinions. (BTW had fibroids and ovarian cyst in 91). All the testing drove me crazy and while I felt terrible, I just quit seeing the endocrinologist until I had new symptoms and they found a pituitary tumor. Before I could get treated for it, it hemorrhaged. I have two kids and I was worried but pulled through that. Then a tumor on my parathyroid. Had that out and improved. Last January they found a tumor on my right adrenal and my norepinephrine levels are high again--but still not sky high. So I was sent to the surgeon and no one seems sure which tumor to remove and today I got into almost a shouting my match with GP---he kept putting me down (why do you have all these problems?). It's a terrible ordeal to go through and I'm not sure what to do. The left tumor (also called mass, nodule--interchangeable I think) is small and the right one is about 3 cm. I also had cancer of the bone 3 years ago, yet I still feel the doctors treat me like hypochondriac. And there's no one to talk to about it because no one I know has this! I would love to know Sick n Tired who your surgeon was--mine is not all that experienced (I live in Minnesota) and I am scared to have the surgery at all--and they want to do the adrenal vein sampling. I am amazed your surgery went so well--he must be good. What I wonder is if you have multiple endocrine neoplasia. You could have the palpitations from thyroid or other endocrine imbalance...Wondering what tests you had before surgery. Also, Rizzy, I would really pursue help due to the size of your tumor and your symptoms. If you have high blood pressure, may be causing brain fog etc., headaches, neck pain --lots of things. I would appreciate any and all feedback Thanks!Norah
    Anonymous 42,789 Replies Flag this Response
  • Norah again...My biggest complaint is fatigue. Do any or all of you have this as a symptom? Again, I was encouraged to hear you felt well after your surgery...I've been afraid to have it.
    Anonymous 42,789 Replies Flag this Response
  • Wondering how you are feeling now ? I had an adrenal mass several years ago and they said they'd watch it and now I have another one. My norepinephrine was high, but not sky high then. I haven't felt well since right before they found it. I have high levels of norepinephrine, but not sky high. I'm terrified of the surgery and wonder what part of the country you live in--sounds like you had a surgeon who knew what he was doing!Do any one you have a lot of fatigue or other endocrine tumors/masses/growths? That's my biggest problem.
    Anonymous 42,789 Replies Flag this Response
  • Dear unregistered, Yes I did have a wonderful sugeon, He did his residency in madison under a dr who specialized in adrenal tumors. so he has done many of them. I love him. He is at the aspirus Wausau Hospital and his name is Dr. Wieland. He is so great the day after my surgery he came to see me..on his own time and brought his little girl with him. She even drew me a picture to make me fell better. That was so sweet she was only 5 at the time. If you would like to chat about this You can email me maybe we can find a way to chat like on ms messanger or something like that. My email is TeHuber4@aol.com Would love to share my experience. I too also have cronic fatigue now. has been for the past few years. Here are a list of my symptoms now I have, Always have a headache use to be every day all day after I had sugery it went away and not recently has returned almost everyday. Not a bad one just a dull ache all the time. fatigue but yet it seems at night I cant get to sleep and then most the time I wake up at least 6 times a night. lately when I get to sleep I sleep pretty good not waking up until my alarm goes off. that one comes and goes...l like it when I can sleep through the night makes me fell better when I get up but never last long. I feel weak most of the time. I know I am not that out of shape but fell like if from time to time. I have loss of memory...getting worse and worse. Some times my kids will ask me how to spell a word I know how to spell and do you think I could think of how to spell it...no. Somedays worse than others. Loss of energy to do the things I do daily. All of these symptoms disapeared after sugery but slowly came back and add a few new ones recetly. about a year ago I broke my ankle first broken bone ever I might add. and I am 36 but I then found out I had a vitamin D deficency. the endo did a cortisole test where she injected some drug to induce cortisol production and drew blood 30-60-90 min after to see how it raised. Base line started at 17 and from what I understand it was suppose to double then triple by 90minutes at 30 was 20 60 was 22 and 90 was 23...To me that didn't sound normal but she said oh that was just fine a bit low but at least I responded thats all she wanted to know. and told me that I was not going into adrenal fatigue or failure. In december 2006 started with kiddney stones and again vit d deficency. pth was normal and calcium was normal put on flowmax and told it would pass...yeah right still have them today yes they pass just intime for more to develop. about 6 weeks ago started with heart palpitations scared me for a sec but thougth nothing of it...few days passed I was getting weaker and more tired couldn't stay awake. when I was awake I ended up really sick ended up in the er to be told nothing was wrong except I had anxiety go home and deal with it. My bp was now up to 149-98 and I have never had high bp normal is 90-70 for me and that is still the high end of normal for me can get as low as 70-50. one night woke up with racing heart tingleing all over and passed out. went back to the dr who said anxiety deal with it. I have never had anxiety nor has anyone in my family. I asked could there be an underlying cause for this anxiety...Dr said sure but untill it shows its ugly head we will never know. Thanks again. lol.next few weeks I had my oldest dr come stay with me because when I was home with my 4yrold I was afraid I would pass out and she wouldn't be able to help me. I then started with extream fatigue, headaches, heart racing, hot flashes and cold chills, pain in my ankle and then my knee and then my thigh thougt it might be a clot but ultrasoudnd showed nothing. pain felt like a really bad bruse that just kept moving up my leg. now I have it in my arm. Seen a cartiologist for the heart thing and got a clean bill of health but told my potassium was low. rececked in a few days and symptoms started to go away and potassium was now back to normal. Not to mention I was dehydrating pretty bad too. Now I am still having fatigue, shortness of breath they tell me is that I am hyperventalating and it is anxiety but I have no other symptoms of anxiety. Sometime during all of this I guess I just suddenly forgot how to breath right...lol. I have the headaches everyday all day start to hyperventilate several times in a day and I make an effort to correct my breathing but don't last to long. Now they say Celexa I must be depreased but I know it isnt that. I have had depression before and this isn't it. I have had cyst in my breast, overies, and adrenal gland. I am going to have a mastectomy due to Sever fibroidcystic disease in a few months but all this axiety started before I even knew any of that. SO Not sure what to do now. Just wait it out and See I guess. Sorry this has gotten to be pretty long. But again if you would like to chat email me. Take Care, God bless
    Sick_N_Tired 12 Replies Flag this Response
  • I have not had any problem with energy. Thats whats really bugging me. I have all this energy but too lightheaded to really move around like I want to. I dont know if its the swelling under and around my eyes that is making me off balance or what. Another problem is that when I feel really swelly headed, no one can tell because you cant see the swelling but I know it is there because my muscles in my face and neck get really stiff and my vision is off because it feels like I have periorbital swelling. If I take a water pill this goes away for a while. Also sometimes at night when I lay on my back, the fluid just drains out my sinus cavity so when I get up in the morning, a lot of the swelling is down. Problem is, I cant sleep on my back for too long because my heart starts racing and it wakes me up.This started happening after I went off my HRT. I notice that my concentration level is worse when I cant see as good. When all the fluid is out of my face, I have no symptoms at all. I am restarting my HRT today, just a small peace of my patch.
    fluffyv 38 Replies Flag this Response
  • Have you gone to see an ear nose and throat specialist about that. It could be completely diffrent from adrenal issues. sounds like you have sinus problems and have you ever tried musinex its over the counter. I have used it because I always have bad reactions to cold meds'...but anyway the musinex dries up excess mucuss....I didn't think It would help for a sinus cold I had but tried anyway...WOW it dried up my sinuses really good with no odd affects from it. Or maybe something like benadryl helps dry up the sinuses. I am wondering why the sinuses. Sure shoulds like an ent could help treat that. I hope you feel better soon. :)
    Sick_N_Tired 12 Replies Flag this Response
  • Been to 3 ENTs, have had 2 CT scans and they are perfect. Plus my nose is never clogged and I can breath great. And now for something different. I got my bad root canal tooth pulled on Monday. It was fractured all the way to the bone. And boy do I feel better. I know the doctor says this is not causing my problem. But Im sure it didnt help any. And now I think I might either have a deep infection or neuritis. It feels like someone is scraping their nails against a chalkboard on the left side of my head, down my cheek and down the front of my neck. And boy am I really dizzy now. Hope this will go away soon. I am going to have him pull the upper root canal tooth also since it gives me trouble sometimes. Maybe its fractured too. My fractured tooth did not show up on any of the X rays. But It must have been fractured for over 6 months because back in Sept, I had the worst tooth pain ever for 2 days and by the time I could get into the surgeon to get it pulled, it stopped hurting so I kept it. A few days after that is when all the swelling started. But the dentist kept x-raying it and saying it was fine and that it was not causing me any problems. And since it didnt hurt, I believed them. I hope I dont have nerve damage now. I really think this is what is causing my swelly head feeling and not the adrenal tumor. It will be interesting to see wont it?
    fluffyv 38 Replies Flag this Response
  • Sick n tired I used to have kidney stones all the time. Hundreds of them. First one on my 21st birthday. They stopped when I turned 32. I stopped smoking and started drinking lots of water and then they stopped. I had calcium oxalate stones so I had to cut back on foods that were high in oxalates like green leafy vegies and chocolate and tea. They are dreadful things arent they?
    fluffyv 38 Replies Flag this Response
  • Yes I agree the kidney stones are not a fun thing to have. I am one of the lucky ones mine don't hurt to bad.. I have no idea why I got them. Dr says he don't know. Could be parathyroid but calcium levels are normal and pth is normal so who knows...I never was one to drink much water. I do now I make a point to drink at least 32oz a day. Your swelled head feeling could it be that your dentist is just not to good at what he does? Just a question you said you were going to have the other root cannal pulled because it was causing you problems. It should cause any problems if it were done right you should not have any nerve to feel any pain in that tooth. Maybe talk to your family dr and see if he will put you on some antibiotics for a trial period and see if it makes it any better. I really hope you find out what it is soon. I feel so bad for you. I cant imagine what you must feel like. Take care and God bless.
    Sick_N_Tired 12 Replies Flag this Response
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