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I'm so angry about being sick that I could just scream

Posted In: Medical Stories 24 Replies
  • Posted By: metamit
  • December 12, 2008
  • 07:09 PM

There are some days I can grin and bear it, but then I get a day like today and I just can't take it anymore.

I am a 32 year old woman who up until a year ago was a normal, healthy woman. About this time last year I began to have fatigue, but I actually didn't think much of it (holiday season, lots of working, just a lot too do as mom of 4 kids and full time business). So the last week of January, 2008 I had to go in for a follow up mammogram for a lump they had been watching. That was my last of 3. They diagnosed it as an inflamed lymph node and I moved on. Then a few days later I had crushing pain in my chest into my neck and left shoulder. I ended up in the ER the next day and they diagnosed it as Pleurisy.

I thought, OK, I'll get over it and be fine. Not so - that sparked bouts of sever fatigue, awful edema in my hands and feet and shortness of breath (we live in a bi-level home and I get winded just walking up the stairs).

At first the symptoms seemed to come and go in about 2 week stretches, each time I thought would be the last. Finally this summer the edema in my legs and feet got so bad there were days it was nearly impossible to walk. I also started getting these awful little red spots and spider veins all over my face, my chest, arms and hands. I started having digestion problems, but they couldn't find anything in an Ultasound or CT Scan. Another visit to my GP without any answers and I requested to see a dermatologist. By now the fatigue was really bad and the heat of the summer seemed to make my edema unbearable.

I finally got in to see the dermatologist and she said that all this is being caused by autoimmune (my skin was getting really bad and she assures me it's not a skin condition on it's own). She did an ANA and my Rhuematoid Factor. The ANA was negative but my R/F was high. My GP had run my R/F in March and it was not high then. So she sent me to a Rhuematologist.

So now I see the Rhuematologist who says he doesn't know what it is. He did some tests and said it's not Arthritis, and that he doesn't think it's Scleroderma yet, but that it could be brewing. At that time (in August and September) I wasn't having "joint" pain, just general aches and spasms in my legs and left arm.

Well, then the pain in my knees and elbows and hands started setting in, which I still have today. Meanwhile, my Rheumatologist will only offer cortizone shots when I'm begging him to please treat what's causing all of this before I get worse.

Today this is a day-by-day struggle. Some days my fatigue is so bad I can't function or think - it's like my whole body just wants to shut down. My skin is worsening by the day, with the spots (which I now know to be angiomas and purpura) and I'm getting indents in skin of my right leg and right pinky. I still suffer from edema, though I found that it's usually worse if I get too warm. I get stiff if I stay in one position too long, and my hands are giving me a hard time - even doing house hold chores is becoming a challenge. I did get the care of a Pulmonologist to help me with my breathing problems - after a CT scan showed some fibrosis in my left lung. I have to go for another CT scan next week, and I got my new GP to help me find another Rhuematologist for a 2nd opinion. We did an ANCA test and another SED rate (my SED rate has been high the whole time I've been sick) and my ANCA was positive for a-typical ANCA, which tells us somethings wrong, but doesn't tell us what.

I don't think my doctors are understanding that all I want is to get well - my dermatologist was the 1st doctor to say "something is wrong here" and now that she's validated that - it seems like any doctor I see just throws their hands up and says "I don't know - let's wait and see". I don't want to get sicker - I don't want to be disabled and at the rate I'm going I don't know what will happen. They did treat me for Lyme's diseases, but none of the symptoms went away after the treatment.

I'm just at a loss and today I'm just mad about it all. Why am I sick? Why me? I just want my life back. I'm tired of being tired, I'm tired of being treated like an outcast at the doctors. Can you believe my Rheumatologist asked me if I've seen a dermatologist when my dermatologist is the one who sent me to him?

How do you cope with this? It's been a year, and yes - I do understand there are people sicker than me, and that things like this can take time to diagnose, but isn't there anything that can be done in the meantime?

I'm one who always stays optimistic about life. I've come to far in life for it to fall apart now. I've made up my mind that I'm not going to let this cripple me - whatever it is - but I can't get passed being mad and I can't seem to find anyone to help me figure this out.

Thanks for letting me vent - I really needed to get this off my chest LOL I do see another Rheumatologist later this month, and I'm just hoping he will know what's wrong. It's just trying to hold on until then -

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24 Replies:

  • Hey there, I don't have any answers about your condition, but I just want you to know that I too am a 32 year old woman (mother of 3), dealing with a painful something for the past 2 months, and doctors who don't seem to be shedding any light on the situation, and I understand how frustrated you are feeling, especially when it comes to the kids. I just want to be normal for them (and my husband). Hang in there, I know you have the strength to adjust to this until they can get it figured out.
    Anonymous 42789 Replies
    • December 12, 2008
    • 09:52 PM
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  • Thanks tmm - it's good (I mean't it's good but it's not) to have someone who can relate - we're too young to feel like this - my heart goes out to you, too. Have your doctors run any tests or anything?
    metamit 23 Replies
    • December 12, 2008
    • 09:59 PM
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  • Hey, I know what you mean about it being good but not good to find someone our own age, both mothers, with a profession who are in the same type of situation. I had a pneumomediastinum (air in the chest around the esophogus) at the end of September. They think it was caused by a perferation of the esophogus, but they're not entirely sure. I went for a jog that morning with the kids and didn't feel funny until the afternoon, but I have no idea how I did it. They hospitalized me for 8 days on just an IV drip (nothing by mouth), and finally on my third CT scan they said the air was gone so I could go home. The problem is, that I've been having the same chest to back pain (on my left side) that I had when I had the pneumomediastinum, since then. I've had 4 CT's now, 2 chest x-rays, 4 or 5 swallows, an esophogeal scope, and two abdominal ultrasounds (I probably glow). Last week the pain started to go down my left arm and my blood pressure went up (it's always been normal), so I saw a cardiologist and he said it's not my heart. So now I'm waiting to see a thorasic person to see if this is normal, a physiotherapist to see if they can help, and someone for the nerves in my chest wall. I lost a great deal of weight from not eating those 8 days and medication of any kind and I just don't go well together. The most I've ventured for since I've been home is tylenol but it hardly takes the edge off. I don't want to be woozy while I'm with the kids either, so I just cope the best I can. But its tough isn't it. Not having the answers you need and feeling like crap. I just keep praying that one day I'm going to wake up and not feel it, or they're going to figure out what it is and treat it, and I pray that for you too.
    Anonymous 42789 Replies
    • December 12, 2008
    • 11:10 PM
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  • Oh - wow - my problems are minor compared to yours - let me know how it turns out - I'll keep my fingers crossed - I think that's the one thing that doctors forget - that we were once healthy people and that having things turn really affects our whole being, our families, our friends. Geesh - you'd think with all of the modern technology and studies, things would move quicker.
    metamit 23 Replies
    • December 12, 2008
    • 11:20 PM
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  • Thanks - my Lymes tests (all 4 of them were negative) but I was treated for it anyway and it did nothing for me.
    metamit 23 Replies
    • December 13, 2008
    • 00:13 AM
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  • It is frustrating knowing that we were two totally healthy women and now we're dealing with this. It seems pretty logical to me, you don't just go from healthy to not healthy without there being some kind of a problem. My husband and I agree that we have to convince someone in our family to become a doctor so that in times of sickness we'll all have someone who we care about and who cares about us enough to take a vested interest and help. How are things going today? How is your family doing? Any upcoming appointments? Have you ever been to a naturopath? I think you should consider it. I've heard a lot of amazing things and at the very least a consultation wouldn't hurt. A friend of my husbands is a Chiropractor and his wife is a Physiotherapist. I went and saw them yesterday and he thinks my pain could be muscular/skeletal, so I'm going to start seeing him everyday and see if it helps. We are both going to get better. I know we can do this!
    Anonymous 42789 Replies
    • December 15, 2008
    • 03:31 PM
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  • This weekend was pretty rough fatigue and pain-wise. I go for another CT and PFT on Thursday and then on the 26th I see a new Rheumatologist for a 2nd opinion. It's ******n my kids, all of this. They see a mom that went from "supermom" to struggling to get through a day. It's put a lot more stress on my marriage (there was already stress there, but now it's worse). But I'm hanging in there - I'm gonna get my life back! LOL I've been looking into natural therapies to help cope, I live way out in the rural area so we don't have a whole lot available to us here. Even my Rheumatology appt. is 3 hours from here.
    metamit 23 Replies
    • December 15, 2008
    • 03:41 PM
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  • Wow, 3 hours is a long drive! I always thought we lived in a rural area, but it only takes us 20 minutes to get to a small city and and a little over an hour to get to a big one. Have you thought about going to a hospital in a big city and having them take a look at you? If my chiropratic care doesn't help that will be my next step. Many people have already suggested it to me and it does seem logical that a doctor in a big city may have had more different experiences and dealt with a larger variety of health issues because there are so many more people. I totally understand how hard it is with the kids. I've completely stopped discussing my health and discomfort in front of the kids. It is a little tough though when I'm with them and someone asks how I'm doing, I try to change the subject or make it sound like I'm fabulous! I know everyone means well, and cares, but unless you're in it, you really don't get it.
    Anonymous 42789 Replies
    • December 15, 2008
    • 10:11 PM
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  • Yeah - the 3 hour trip is to the University hospital - we have hospitals and clinics 1/2 an hour from here, and that's where I've going and they haven't done anything. That's why I'm making the 3 hour trip - it was either U/W or the Mayo - but my GP is part of the U/W. I'm hopeful maybe they can help with this. I HAVE to get better by Summer, summer is the worst for me because I swell so bad. Let me know how the Chiro works out - but I'm with your friends - maybe seeing a larger hospital would be worth it for you too? Hang in there ....
    metamit 23 Replies
    • December 15, 2008
    • 10:30 PM
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  • Hello, I've read your initial posting and I'll try and help you find some direction if I can. Realize, however, that the internet is sorely deficient in its ability to permit much in the way of accuracy and in the absence of direct evaluation, I will be basing my opinions strictly upon the information you will be providing. If you have copies of the actual diagnostic test results which have been performed to date, it would be helpful if you'd post those for me so I can review them for any correlation that may be evident. Please try and list the information as it appears and don't make any interpretations of anything that doesn't appear clear. Just let me know exactly what you see on the reports. Also, with respect to your symptoms, I'd like you to please elaborate if you will regarding the digestive problems. Tell me what the first symptom was and how it has progressed to the present time. Also, tell me more specifically about the fatigue. Are you physically weak or simply tired? In other words, if you have to undertake a physical task, regardless of whether it makes you breathless, do you still recognize your physical strength to be adequate? Tell me about the spasms. Is this muscle spasm you are observing or do you see the skin twitch and dance about in various places? Are you noticing any change in voice or having any difficulty with salivary secretions or swallowing? Tell me about your sleep habits, whether you are experiencing any type of disruption, vivid dreams, night terrors and that sort of thing. We'll be going through this sort of exchange for several postings until I can get enough information to become better acquainted with your medical history. Also realize that this is a public forum and although it's anonymous, you will be publishing personal data that can be viewed by others. This tends to violate your privacy rights to some extent, so I just want you to be aware of this fact when making any decisions to respond. Again, I'll try and help you gain some direction but we'll need to obtain more information to avoid creating even more frustration. The last thing needed in this case is more guessing or an absence of facts that lends yet another dead end. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • December 16, 2008
    • 03:22 AM
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  • Thank you - thank you - thank you. As much as I've been poked and prodded - my life is an open book right now as long as it sheds light or gives me a place to go with all of this. I have copies of everything since August - my previous records are scattered so we had them forwarded to U/W so all I have on those are the notes I took. Phew! Okay - here we go: The fatigue we think actually started around Thanksgiving of 2007 - after I initially got sick in February of 2008 my friends said they noticed me looking tired and complaining about being tired before the holidays. I only found this out after I got sick in February. The fatigue isn't just an "I'm tired" feeling - it is just everything wants to shut down, no matter how much I rest or restrict my activities. Sometimes I will feel OK for the better part of the day and then suddenly it creeps in and it's like a switch is thrown. I'm not tired so to speak, it's just the energy is suddenly gone, I'm very weak, I can't think and I can't function. Some days I wake up feeling like this, other days I feel mostly OK when I wake up and it seems to come later in the day. My whole mind and sole is just drained. Even if I lay down to rest, I can't fall asleep/ It's still present to this day, I think I've just learned to cope better. As far as I know my sleep is a pretty sound sleep. I actually use be to a light sleeper for the most part, but now my husband tells me I'm pretty much dead to the world when I'm asleep now. I do sleep about 8 to 10 hours each night. I do have the occasional weird dreams which are usually early morning hours when I wake up - nothing like night terrors or nightmares, though. Just dreams. Some days the fatigue is quite severe and other days manageable. I've found that if I pace my daily life and not try to do too much when I feel well, then I can cope better. I do notice that the fatigue seems to be worse on the days my pain is worse, now, but that's just been since the pain started in September. The only other early symptom was the chest pain in February that sent me to the ER - it was like someone was sitting on my chest and pain throbbed into my neck, left shoulder and down my left arm. I really didn't think it was a heart attack at my age, but I couldn't breathe which scared me more. I really had to work to pull in my air, and that actually lasted a few weeks. The ER diagnosed it as Pleurisy, which my GP said he thought it may have been given the symptoms and high SED rate. We did do 3 rounds of antibiotics through February to April with out any change. The muscle aches initially began in my legs through the Spring and worsened into the Summer. I had really bad edema through that time so I assumed that's what caused the pain. I had muscle cramps really bad in my right calf through most of the Summer. The muscle spasms I get now are in my left arm in the forearm just below my elbow. I had noticed some weakness in that arm in early October, where it just seemed like the strength wasn't there (like when I picked up my son or tried to hold something heavy). In mid October I actually ended up in the ER because when I brought mail in and set it down on the table my whole arm tensed up. It was like the muscles just suddenly contracted and I couldn't straighten out my arm - it was very painful. I loosened up after a couple of days. I still get spasms (not twitches) in that arm, and it's usually if I bend my arm for more than a few minutes at a time. I've particulary noted it when I'm on the phone and holding the phone with my left hand. I should note that in my line of work I spend a lot of time on the phone, but I've never experienced this before I got sick. Even if I'm laying in bed and I bend my arm to place my hand on my chest, I get aches and weakness in that arm. And it also feels like there's a bruise way deep inside the muscle. When I feel the muscle spasm - it's nothing visual that I can see, but you can feel the muscle tighten if you place your hand in the crook of my arm. The shortness of breath is still present, and I've just learned to adjust for now. When I get short of breath, I do have to sit down a second to catch my breath (like after I chase down a child or carry a load of laundry up the stairs) but I don't feel weak so to say. I just can't catch my breath. Sometimes I get dizzy and get a "head rush" kind of feeling. The stomach problems began in late March/early April thereabouts. It started as some pressure in my upper & lower abdomen and I was having pain in my stomach itself into the right side of my abdomen. I was having a "full" feeling after eating even just a little bit. It was making me quite nauseous and I was always bloated (at first I thought it was the edema causing it). I was having bad indegestion and heartburn which I had only ever had when I was pregnant (and I wasn't pregnat now). I did have medication-induced stomach problems as a teenager (too much motrin) so I thought maybe it was just the medications causing my stomach to act up again. My GP put me on a regiment of 2 Zantac 150 per day which seemed to help alot. I still have bouts of the stomach problems like that, but now in recent weeks I've been having this feeling like there's a "lump" in the back of my throat which is causing me a bit of a gag reflex when I eat. It makes it hard to swallow food down, I find that softer foods seem to go down a little easier than hard foods which helps. I do plan on addressing that with my new doctor, too. There's been no change in my voice that I've noticed, I do get dry-mouth (but it's in the back of my mouth) quite frequently, but nothing consistent. So far from the information I do have from my previous GP is that they've ruled out my Thyroid, Heart, Liver, Gall Bladder and Kidneys through abdominal Contrast CT, Stress Echo and abdominal ultrasound. These I don't have copies of the records for. I have all of the diangostics from August through today, though, the first being from the dermatologist. The dermatologist diagnosed my skin spots as "spider angiomas" and "purpura" and diagnosed me as having a "Rheumatoid Condition" and sent me to the care of the Rheumatologist. I do need to note that she biopsied a mole on my chest which the results were normal.
    metamit 23 Replies
    • December 16, 2008
    • 00:11 PM
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  • Here's all of the tests from then on (I don't have the test, but I do know my GP ran my R/F in April and it was negative, I did have elevated SED rate in February and April, low iron throughout but I've always had low iron even as a child): 8/19/08 15:00 ANA ProfileANA Screen NegANA Screen:ANA Screen includes dsDNA, Chromatin, Ribonucleoprotein P, SSA, SSB, Centromere B, SM, SmRNP, RNP, SCL-70 and Jo1 8/19/08 15:00 CryoglobulinCroglobulin NEG 8/19/08 15:00 Hemogram+PLT+AutoDifWBC 10.7RBC 4.46Hgb 13.3Hct 38.7MCV 86.9MCH 29.9MCHC 34.4RDW 13.0Plt 309MPV 8.6Neut 76ANC# 8.1Lymph 17Lymph# 1.9Mono 6Mono# 0.6Eos 0Eos# 0.0Baso 1Baso# 0.1 8/19/08 15:00 Hep Panel, GeneralAnti-HAV NRHBsAg NRAnti-HBc NRInterp SEE BELOWHepatits General Screen Interpretation: Serologic pattern suggests no current or past infection with hepatitis A or hepatitis B 8/19/08 15:00 Rheumatoid Factor by LatexRheum-factor 1:1280 A RFQnt 443 HRheum-factor:RA:A pos. result neither rules in nor rules out rheum A. Likewise, low/neg titers/results do not exclude RA. Assess with clinical and other lab findings.RFQnt:Results > 12 IU/mL are positive. RF titer is estimated from prior correlation studies. 8/19/08 15:00 Cariolipin Ab Scn w/ B2GP1ACL-Screen NEGB2IgG 90 9/10/2008 15:21 Histone, AntibodyHistone-Ab. 0.1Sent To: Mayo Medical Laboratories - Rochester, MNHistone-Ab.:--EXPECTED VALUES-- 1.5 Positive) 9/16/2008 09:28 CK - Creatine KinaseCK 144 9/16/2008 09:28 Sedimentation Rate-ErythrocyteESR 28 H 9/16/2008 09:28 Thyroid Stim. HormoneTSH 0.90 9/16/2008 09:28 Anti-Neut. Cytopl. Ab. (ANCA)c-ANCA NEGp-ANCA NEGAtype-ANCA POS AAtyp C-ANCA NEGMpoAb Pr3 This result occurs in inflammatory bowel disease and other autoimmune diseases where its clinical significance is unclear. It does not occur in Wegener granulomatosis microscopic polyangitis (and its renal limited variant), or Churg-Strauss syndrome. Treatment decisions should not be made soley on the basis of ANCA test results. ECHOCARDIOGRAM REPORT, ADULT Service 09/11/2008FindingsTechnically adequate studies obtained from transthoracic echocardiogram.Rhythym - Normal sinus rhythm.The study showed the left ventricle to be of normal size with a good systolic function. Ejection fraction 57%. The left atrium was of normal size.The aortic root was of normal dimensions.The pericardium was not thickened, and there was no pericardial effusion.The inferior vena cava collapse was well deomonstrated on deep inspiration.Mitral valve apparatus showed thin leaflets, opening and closely quite well. No evidence of mitrail stenosis, mitral valve prolapse, or flail mitral leaflet. Color Doppler showed a trace of mitral regurgitation.The aortic valve was tri-leaflet, opening and closing quite well. No evidence of aortic stenosis or aortic regurgitation. Tricuspid valve leaflets were thin, opening and closing quite well. There was a trace of tricuspid regurgitation.Pulmonary valve not very well identified, but there was a trace of pulmonary regurgitation. PA pressures could not be estimated.No clots seen in all of the views demonstrated. Overall Conclusions:1. Normal sized left ventricle with a good systolic function. Ejection fraction 57%2. Normal sized left atrium.3. No echo evidence of mitral valve disease or aortic valve disease.4. No evidence of ASD or PFO or Bidcuspid aortic valve.5. Trace of tricuspid regurgitation.6. Trace of pulmonary regurgitation.7. PA pressures could not be estimated. CT CHEST WITHOUT AND WITH INTRAVENOUS CONTRAST Service 09/16/2008Clinical IndicationsShortness of Breath. Chest Pain. Positive rheumatoid factor Technique- Before and after the administration of intraveneous contrast, contiguous Helical images were obtained in the axial plane.- Coronal reformatted images were performed- Additional imaging utlizing a high-resolution algorithm was performed. ComparisonTwo-view plain radiographs of the chest dated 09/10/2008.FindingsThere is a curvilinear density at the left lung base extending to the pleural surface which is not readily apparent on the recent plain radiographs. In the axial plane, this measures up to approximately 1.1 cm in diameter. Minimal cylindrical bronchiectasis is present within the left lower lobe. No Nodules are identified. No abnormal air-trapping is identified. No pleural or pericardial effusion is noted. No hilar, mediastinal, or axillary lymphadenopathy is identified.ImpressionBand-like density within the left lower lobe extending laterally to the pleural surface as described above. This likely represents fibrosis. There is minimal cylindrical bronchiectasis within the left lower lobe as well. These findings are nonspecific but may be seen in rheumatoid arthritis patient's. Otherwise unremarkable CT of the chest. XRAY/CHEST,PA/LAT Service 09/10/2008Clinical IndicationsPositive Rheumatoid FactorFindingsNo comparison studies. The lower lung fields anteriorly are partially obscured by dense breast parenchyma, but this does not appreciably limit the interpretation. Lungs are clear without effusions or infiltrates. No pulmonary nodules. I do not see bronchial wall thickening. No effusions. Bony structures are unremarkable.ImpressionNo acute cardiopulmonary disease. No underlying interstitial lung changes or findings to suggest rheumatoid lung. Fibromyalgia Tender Points Test 10/23/20086 / 18 points Other tests that I don't have copies of:Cardio-Pulmonary Exercise performed by my Pulmonologist he says I performed well and that my diffusions after calculating for lung capacity was OKPulmonary Function Test showed a lowered diffusion (PDT given 2 weeks prior to CPX)Lymes Test done in October - first one was "borderline" so they sent it to the Mayo for further test which concluded "negative". My GP treated me for Lymes anyway through October into November - no change in symptoms.D-Dimer (sp?) done in October by my Pulmonologist was normal. Symptoms:November 2007 - slight fatigue began January 2008 - final mammogram diagnosed a small lump in my left breast as an inflammed lymph node February 2008 - sudden chest pain and shortness of breath, chest pain developed into chest ache that is not always present, fatigue became severe, began getting slight edema in my feet and hands March 2008 - continued shortness of breath, chest ache and sever fatigue (had about a 2 week remission in fatigue), problems with my stomach began and all these symptoms continued through April April 2008 - edema worsened and spread to my legs and face, continued shortness of breath, chest ache still present, stomach problems still present, began to notice spots appearing of face, chest, arms and legs May - August 2008 - symptoms began to worsen and become more frequent. In July, began to have weakness in hands and some pain in hands with activity (painting, doing dishes). Edema really severe through these months, aches in legs worsening - not a joint pain, just overall ache in my legs, alot of stiffness in legs, hips, back, skin worsening with the spots and now getting light-color spots on nose, cheeks and arm (almost look like little scars) and veins are visible all over me. "Lump" appears over time in my right leg above ankle. September 2008 - pain began in left knee - not sure if it's arthritic pain - feels like there's a bruise under my knee cap. October 2008 - left arm weakness and muscle spasms, continue pain in left knee and now left arm and right elbow, hand swelling and pain in right middle finger and right pinky. The "lump" in right leg actually appears to be an indent in my right leg (below where it looked like there was a lump) and there is another indent like this on the upper-right calf as well. November - present - continued pain in left knee, left arm and right elbow, now in my left elbow and right knee as well. Pain in hands and continued weakness when I try to grip. Pain in right middle finger, 4th finger and pinky. There is now an indent in my right pinky between my knuckle and fingernail where it almost looks like there's just no padding or fat underneath it. I'm also developing the same kind of spot on my left middle knuckle and a very small pin-point one on my left index finger. I've got callouses developing on the right pinky where I shouldn't have them. Fatigue and shortness of breath still persist, however the chest ache is no longer there. The edema only presents itself if I'm in a warm environment or I sit too long. I'm having a hard time with my throat - naseau, stomach bloating and indigestion. And think that's all of it - sorry if it's too much LOL I so appreciate you taking a look. I do go for another Chest CT and PFT this Thursday - my Pulmonologist is a wonderful man and he's very supportive of my seeking a 2nd opinion. He's admitted to me that he's stumped with all of this, too.
    metamit 23 Replies
    • December 16, 2008
    • 00:13 PM
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  • A few more things I should mention is that my old Rhuematologist did do an xray on my left arm and left knee which he said looked fine, but I don't have the report on those. He did offer cortizone shots for me knee which I declined, and I opted for topical Voltaren instead which didn't help. He did briefly discuss DMards but said he would only offer the treatment if I agreed to cortizone shots first. I declined. The other thing that my GP has noted to my new Rheumatologist that I see in a couple of weeks is that I did have pre-eclampsia HELLP syndrome with my 3rd child in my 26th week, but I carried my 4th child full-term without complications until 3rd day post-partum when I had pre-eclampsia like symptoms (edema, high blood pressure, headaches). In both cases I was treated with hydrochlorithizide (sp?) and eventually I went back to normal with no signs of permanent damage to my liver and kidneys. The HELLP syndrome puzzled all of my doctors at the time because I wasn't at risk - I was a healthy 28 year old woman and it was my 2nd child with the same man - no prior complications. The only other problems I've ever had medical-wise is low iron, irregular periods, irregular heartbeat (had it for years and I'm told it's fine) and I have a tendancy to develop lumps in my breasts that are normal. I've probably had more mammograms and ultrasounds that most 50 year old women LOL
    metamit 23 Replies
    • December 16, 2008
    • 00:31 PM
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  • Okay, you did an excellent job of responding with some needed information and I was looking as much at what was not done in the way of testing as what has already been considered. Someone else mentioned this and it was also my initial impression. There is certainly some symptomatic evidence to suggest that you have scleroderma. More specifically because of the duration of symptoms, I would further suggest that this falls into the category of CREST syndrome, which is a limited variant of the disease. The suspected cause varies but of interest in this particular case is the supported theory of microchimerism, wherein fetal cells circulating in maternal blood trigger and immune response that sets in motion the autoimmune process resulting in scleroderma. A remarkable note is the radiologist's interpretation of what appears to be fibrosis in the left lower lung field that could in fact, be due to sclerosing tissues consistent with findings of scleroderma. The fact that your organs in general do not appear to be affected by virtue of testing done would more indicate this might be CREST because organ involvement is typically an early phase symptom. Having said that, however, I note among your diagnostic test profile that the ANA is negative and although this is only a screening type of test, it would be of significance in looking for supportive evidence of scleroderma and the differentials within the autoimmune spectrum due to the fact that roughly 90% of patients with scleroderma have a positive ANA. At this point, my suggestion is to have the following specific tests performed if possible: anti-scl70ACApunch biopsy of the affected scleral or scar tissues observed on the skin surfaces. There are a number of differentials which can also be possible here, such as Werners or one of the lipodystrophies but for now I think it would less complicate things to focus on ruling out scleroderma in this case. Once you've obtained results to the above tests, it might narrow the field somewhat. Let me know if you have any questions and I'll look forward to hearing back from you. Please realize that at 84 years of age, it may take a day or two for me to get back to you as I tend to move somewhat slower these days. Also, you may want to extend your appreciation to the forum member known as fewdforthought, who originally alerted me to the location of your posting and a request to review it. This individual initially suggested scleroderma as possibly being the problem and from what I've read of your symptoms I would tend to agree at this point. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • December 16, 2008
    • 11:43 PM
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  • Let me apologize to metamit because I am going to briefly communicate across the thread... You are an amazing historian! One thing I started to mention a few times in the past is a recommendation that people print out some of these extremely descriptive posts to have on record the chronology of their symptoms and lab results, as you move on and get seconds opinions, etc, nothing is ever as effective as your measured recollection of the evolution of your symptoms. Excuse my brief rudeness... Hi again, Dr Cottle. I had a few brief questions to ask you, if you had the opportunity. I can be emailed at fewd4thought@gmail.comIf your schedule prevents, I understand... thanks again for taking a look for metamit! Great reminder for everybody about the pathophysiology of CREST!
    fewd4thought 126 Replies
    • December 17, 2008
    • 03:15 AM
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  • :)Hello,I just read your story and could so relate. I don't have exactly what you have but I"m 35 and have Liver Cancer for no known reason. I am looked at like I am an alien whenever I go to appts beacause people with Liver Cancer have usually a certain criteria that I don't and I think becuase this stumps the Doctors their ego's are shut down. One year ago I too was a normal functioning person. Recently married and making great money in a big house. I now have lost everything due to not being able to work and do not know how long I will live. They can't even give me statistics because of my age and they don't know how I got Liver Cancer in the first place. I cried when I read what you said about wanting your life back. I am angry all the time about that and know I have no control over my situation. I feel for you and your family and just know that you are not alone wanting your life back. I would trade anything in the world and live under a bridge to have my life back! I have to meditate just to keep my sanity. I don't have children so I don't know how that would be. We were planning on starting a family this year and now I am angry to think that after I pass my husband might have a family with someone else and be able to live the life I wanted for us. My husband tells me it's not so, but lets face it life goes on and he's on 34 himself. So I have to be at peace and know that when my time comes I have to believe there is a better place I will be. Thank you for sharing your story,Sincerley,Darla
    Darlab 1 Replies
    • December 17, 2008
    • 06:09 AM
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  • First of all, I am so thrilled that JCottle has been referred to your case and that he's got a feel for what you are experiencing. I truly believe that he can figure this out with you -- 84 years of life and medical experience brings incredible wisdom. You are so going to figure this out, and I'm going to keep praying for you. Secondly, reading the age of Darla and her diagnosis really makes me crazy. There is no need for anyone in their 30s to not get the help they need to make them healthy, this is the 21st century. Us 30 somethings need to stick together and support each other, we can get through this.
    Anonymous 42789 Replies
    • December 17, 2008
    • 03:07 PM
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  • Thank you Dr. Cottle and thank you fewd4thought - and thank you to all who have read this thread and posted. First, let me just say that if I've learned anything this past year is 1) I can't be shy about my results or symptoms because the more information I make available, the closer I become to a fix. 2) I am with you fewd - if more people would come to light about their conditions I think it would benefit not only other sufferers, but the medical staff as well. I have no quelms about posting my story if it helps someone LOL Darla - your story breaks my heart - and I totally relate to your anger, but my problems are so minimal to yours, and yet you found the time to relate to me - thank you for that. My thoughts go out to you and your family - being as young as we are is very tough. And with your condition - that's huge pill to swallow. I can only imagine. If you never need to vent or just want someone to "listen" I'm here. Yes tmm - I think we do need a support group! It's unbelievable how many stories I've read about women like us. What saddens me is that there are too many doctors that don't listen because they think that for one, we're too young for most things to be happening and too many doctors can't admit when they don't know and would rather sit on it then send you to someone that can help you. I do have some good news to update all of you with, though. It's actually so very ironic. Yesterday I read Dr. Cottles' post and was immediately thrilled to have someone take a look. I spent yesterday morning putting in any information I thought would be helpful. Then I went to work.Yesterday morning U/W Health called and had a cancellation and could me in with another Rheumatologist if I could make it by 2:30 that way I wouldn't have to wait until next week. Even though we had snow storms coming, I took the chance and went. One thing I've been stumped about is my GP kept referring to the HELLP syndrome from my 3rd pregnancy - I never connected that and actually thought maybe he was heading in the wrong direction. So I went to see my new Rheumatologist yesterday and he mentions "my history of autoimmune" and I was like "huh? What history?". He brought up HELLP - in the 5 years since my son was born not one doctor told me that HELLP is an autoimmune until yesterday. The doctor did a bunch more blood work and said that these spots all over my skin are not angiomas or peticia - the diagnosis is telangiectasis and it's on my face, chest, arms, hands, fingers and even my lip (I didn't see those until he pointed them out). He also included my bowel problems, my lung problems and my swallowing problems with my condition, he doesn't think the "dents" in my leg and finger are simple atrophy, but he hasn't diagnosed those yet. I'll be getting more tests done for those when I got back to see him in March.He says it's definately autoimmune that I have, but which one(s) he's still not ready to confirm yet. He wants to wait on some more lab tests - BUT - he says he wants to get this under control in the mean time. So, today I started a regiment of Prednisone and Hydroxychloroquine. the Prednisone I'll only be taking for 16 days days. The other one I'm on for 3 months. He says we'll see if this does anything for me. If it does, he says we're a step closer to confirming a diagnosis, if it doesn't then we try something else. Meanwhile, he's working to figure it out, which he says may still take a few more months, but if I can get some relief in the meantime, that's the best Christmas present I could ever have. We did, however, rule out RA for now because although I do have joint pain, it's not inflammation or deterioration of my joints. My doctor is leaning towards connective tissues autoimmune like Scleroderma, Lupus, or something like that, but he didn't want to be specific yet.So - then I wake up today to Dr. Cottle's reply. And it was almost identicle to the information I got at the doctor's yesterday. I do know he's running more antinuclear antibody tests, and he's also running some tests to check my bowels because of recent digestive problems he brought up, and he's running more protien tests. I should start getting the lab results next week. I know they took a lot of tubes of blood. He didn't mention a biopsy yet, but I do know he's ordered a test for scleroderma but I don't know what the test is. It was almost like fate (yeah - I'm mushy like that). So it was like confirmation for me after being at the doctors and then Dr. Cottle almost echoing my doctor - how ironic is that? I've been talking to my sister about writing a book about my whole experience, and now I'm really thinking about starting one to chronicle all of this - not as a poor-pity-me book but as a "how to get a proper diagnosis and treatment and to kick your diseases' butt even when the doctors tell you your nuts!" LOL. I was suppose to go for a CT scan and stuff with my Pulmonologist tomorrow, but had to reschedule (more snow storms) so now I'll be there next week. But I figured now that I've finally got something to atleast try to relieve me, I can be fine for now :-)I'm going to print my thread for my new doctor - sometimes doctors laugh when you tell them "I went to this forum" - my new one didn't. By profession I am a web developer (been really hard to work lately LOL) - and I have a new inspiration. I am going to develop a new website for women like us - 30/40 something women - with medical needs that fall on deaf ears. I want to build a whole community to put faces behind these stories and stamp these women's lives into someone else's thoughts. Maybe, just maybe, if we make enough noise about situtations specific in one area - doctors will wake up and rething how they look at cases like ours. I know doctors are only human, too, and can miss something. But when the patient is told "it's nothing" and it is in fact something, there's a change that needs to happen. Thank you again Dr. Cottle - mighty fine. BTW - my real name is Tamra - I'm a 32 year old woman, mom of 4 boys in North Western Wisconsin - I'm the face behind this "soap opera" though there are many more out there. I would love it if some of you would be interested in conspiring with me on a new website. Anyone interested, just post here.
    metamit 23 Replies
    • December 17, 2008
    • 10:03 PM
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  • I can't tell you how relieved I am for you to finally have some answers. You are so right, this is the best Christmas present you could receive. I also think your website idea is fantastic. Ironically, I'm Tamara from Canada.
    Anonymous 42789 Replies
    • December 17, 2008
    • 10:37 PM
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  • Thanks Tamara - what part of Canada? I think our name must have been like "the name" in the 70's or something because that's like 12 or 13 Tamara, Tamera and Tamras that I know now LOL How are you feeling?
    metamit 23 Replies
    • December 17, 2008
    • 10:41 PM
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