Ten years later..... | Lupus Forums at The Lupus Site
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Ten years later.....

Discussion in 'Introduce yourself' started by Felicity, Mar 21, 2016.

  1. Felicity

    Felicity Member

    Ten years of going to doctors all over the US and getting nowhere but spending plenty and enduring lots of procedures and tests, I just returned from Mexico City 2 days ago with the diagnosis---Lupus and MCTD.
    I already had been diagnosed with Sjogren's back in '07 or '08, but apparently the Lupus came first but nobody figured it out until now. The problem is that I've always been seronegative. Surprise surprise, it's not uncommon to have Lupus and be seronegative. But apparently only a handful of doctors know this. Why are all the rest of them asleep at the wheel or too lazy to stay up to date on diagnosing? The doctor I saw in MX City trained at MD Anderson and his office is at Hospital ABC, which is affiliated with Houston Methodist Medical Center.

    Ten years of vomiting about every 3 months, red face, diarrhea/constipation, fevers of unknown origin (105ºF/40ºC) for a week, low grade fever for months and months, nausea, bloating, loss of balance, dizziness, wacked-out CBC results, chronic anemia, crushing fatigue, bad sleep, diffuse all over body pain/aches, red face, heat intolerance, blah blah blah.......along the way I picked up other diagnoses (GERD, hiatal hernia, diseased gall bladder, dysphagia, achalasia, motility disorder, fatty liver, intussusception, diverticulitis, hypothyroid, diabetes, high blood pressure, fibromyalgia......I know I'm leaving something out...) but nobody could or would put the puzzle pieces together until now.

    So it started in early 2006 with high fever, splenomegaly, enlarged liver, horribly red face, hair loss, weight loss, vomiting, diarrhea, acute abdominal pain, Raynauds in the toes, felt like a train ran over me, was in hospital for a week, they were packing me in ice to try to get the fever down........it was a crappy hospital but they ran every test in the book (most of which were ordered by me because I was a phlebotomist in the US), ANA negative, HIV negative, hepatitis negative, super high Sed Rate, super high C-Reactive Protein, CTs showed enlarged spleen and liver, and MRI showed what they believed to be pulmonary fibrosis. Thank god that was later downgraded to bronchiectasis in the US via a high resolution MRI.

    Anyhow, I never really got well. I've had a handful of months over the past ten years where I sort of almost felt normal. So now I've finally got a rheumatologist and I guess I'll be going back and forth (with hubby) to MX City for the rest of my life. It's a 4.5 hour bus ride, but the buses here are super awesome (free lunch, soda, movies, headphones, AND wifi), feels like you're on an airplane, and the bus stations are super clean and humongous, kind of like malls, with lots of shops.

    Happy to be diagnosed---maybe now half my offspring and the ex will stop telling everyone and their brother that I'm a hypochondriac, although I'm not holding my breath and in reality I don't care what they think.

    I've got a lot to learn and it sure looks like here is the right place. I'm glad to have found y'all (I'm from Louisiana) and I'm looking forward to picking all y'all's brains for advice, help, tips, and info on the latest and greatest meds/treatments......Thanks to all y'all!
  2. keebler

    keebler Moderator

    Hi Felicity and welcome to the forum.
    If only people could see out insides they would see we are not feeling well.
    Members are very supportive and caring.
    I look forward to getting to know you.
    Take care,
  3. x_claire_x

    x_claire_x Moderator

    Hiya and welcome....sounds like you too have had quite a journey to diagnosis, glad you got there in the end.
    I have MCTD too with Lupus predominating. I also have a degree of Pulmonary Fibrosis which is very typical with MCTD. It has been stable though for over three years, when I was very sick.
    The Respiratory Specialist said if I had walked into his office with PF without having an autoimmune diagnosis he would have given me two years of survival only. That was what I had stupidly read on the internet....now I know it doesn't apply in the same way with autoimmune disease, which isn't stated on the internet !

    I am glad you have found us....it can really help to be amongst those that get it.....and to hear from people who have travelled your path.......see you soon....Claire
  4. Felicity

    Felicity Member

    Hello Keebler, Thank you for the warm welcome. I'm very happy that I found y'all. I don't feel so alone anymore.
  5. Felicity

    Felicity Member

    Hello Claire,
    Thank you so much for sharing your story. I'm particularly interested in that they diagnosed you with pulmonary fibrosis. So you've had this for 3 years now. How do you fare? Are you short of breath? Tire easily from lack of oxygen? Do you take medication for it? Do you have to use supplemental oxygen? Do they do MRIs of your lungs at regular intervals? Is this different from interstitial lung disease? I've heard about that one going along with lupus. Sorry for all the questions. I am so curious to hear about your experience.

    They told me (here in Mexico) I had the fibrosis in 2006, when I got so sick, and they were at their wit's end to figure out what was wrong with me. They also told me I'd be dead in 2 years. Then, as I mentioned, a pulmonary doctor in the US said it was not fibrosis but bronchiectasis. But I kind of think she was almost guessing because my MRI results didn't really fit into a neat organized diagnosis category. And at that time nobody was suspecting lupus or MCTD so they just didn't have a clue as to what was going on. I haven't had a lung MRI since 2008 but I continue with respiratory issues, even when I visit my daughter who lives at sea level. My oxygen saturation rates (when I talk or walk or do any activity other than sitting) go down to lower 90s at sea level and at high altitude the O2 sats go down to the mid 80s . I use supplemental oxygen at night during sleep, and if I'm sitting around just reading or coloring, then I also use the oxygen concentrator during the day.

    Our home was at 8000 ft (about 2500 meters)---it got so hard for me to breathe up there, constantly gasping for air, sometimes fainting, and I was anemic so that made it worse. The doctors in the US just threw their hands up in frustration and told me to move down to a lower altitude. All the lower altitudes in Mexico are very hot. The heat is intolerable, in the 40s C. It makes me melt into a lump on the floor. I feel like I can't move and I feel horrible all over. There is no air conditioning so you just live with the heat.

    So we moved to my husband's home town, which is at 6000 ft (about 1820 meters) which has helped some, but the summers here are dry, hot, and super sunny. I still use oxygen at night and I am still out of breath when I go up and down steps or do any physical activity. I hate the sun, sometimes it makes me vomit, super nauseated, crushing fatigue. The winters are okay but also too dry and the eyes are in constant pain from the dry air and blowing winds.

    I hope to find out more my condition, and how it can be handled/treated when I finally get to see the rheumatologist in MX City in April. Let me know how you are doing, do you get out of breath, do you get respiratory infections easily, etc, etc, sorry for all the questions!
  6. x_claire_x

    x_claire_x Moderator

    Hi Felicity.... my transfer rate is 53% but it has no impact apart from getting a bit breathless if I am walking up steep hills with the dogs...but to be honest so do non luppies. He said my lungs would have to be worse to have an impact unless I was a marathon runner...when I would notice it. I don't have problems with colds/chest infections as a rule...though currently got a lovely urinary tract infection :0((( . I had CT scans done as I was on a trial when it was discovered that I had lost over 35% lung capacity since the last time they checked (got a bit lax) ...in under two years so had to see a Respiratory specialist...my peak flow is obviously low too.
    I wouldn't want to have too many CTs so have lung function tests every six months and if anything changes...a CT scan. A CT would be more informative I would think for you, to be more accurate. I am not on any specific meds for lungs but have been told by a locum Rheumy last week that Mycophenalate is excellent with protecting the lungs...which I didn't know...and I am on.

    Intestitial Lung disease is the same as Pulmonary Fibrosis...basically the disease has scarred some of my lung tissue...scar tissue doesn't expand/transfer oxygen so thereby reduced transfer rate....as I understand it. I felt dreadful around 4 years ago, to the point of wishing I could leave . I felt so rotten and I am sure that is when MCTD was wreaking havoc on my lungs. When I had a collapse and was diagnosed eight years ago my lungs were badly affected and they were torn between treating me for Acute Pneumonia or waiting to see if it was autoimmune...husband wanted me treated as I was seriously ill...I however said...don't care anymore what you do...just don't ever let me go through this again..whatever it takes ! So I wasn't treated and they diagnosed MCTD finally with Lupus predominant.

    Interestingly I find the heat can make me feel awful all on it's own....and certainly exacerbate symptoms. I am fine if there is a breeze but if not I can really struggle. I still go abroad for holidays given the chance but plaster on factor 50 that has been prescribed for me and keep cool as possible. Obviously don't sunbathe etc. I like the warmth for my bones....and my spirit. The heat you are describing, I would find very difficult.

    Hope some of that has helped and fire away with the questions...that is what we are all here for...:0))) .....take care, Claire
  7. Felicity

    Felicity Member

    Hi Claire,
    Thank you so much for all the information. I'm going to research the medication you are on for your lungs to see if it is available in Mexico. I hope so. When it first hit me, ten years ago almost to the day, I too wanted to leave this planet. I've never felt that sick before, and I've been sick a lot all through my life. But this was so different. I really did wish to die. Every part of my body, everywhere, everything, every bone hurt, everywhere all over my body. It was as though I had been run over by a train. I lost so much hair, so much weight, I was vomiting and the diarrhea was horrible. I couldn't stand up or walk because I was so weak. The hospital couldn't figure out what was going on. And I wasn't fluent enough in Spanish then, and this added to the stress I was feeling, as well as to the anger I felt in not being able to directly answer questions in order to tell medical personnel how I felt. My husband stayed with me of course all the time---this is his country so communication was not an issue but I didn't like it that I was not able to speak for myself. The nurses here are different, or at least they were at that time. I think things have changed now. But back then they were not worried at all about how much they hurt a patient to get an IV in, they would just keep digging and digging. And when a red streak would start to run up my arm from the IV, they would refuse to change the IV to another vein. I'm a phlebotomist and I know when a red streak starts to run up the arm from an IV, this is not good, not good at all. But what we, my husband and I, had to go through to get them to believe me that the IV must be changed to a different vein----oh dear, it was quite a battle, everything was a battle with the nurses. The nurses here are tyrants. I guess you could say it's a cultural thing.

    And if I told them this or that vein would blow if they tried to use it, they didn't believe me and would try to use that vein anyway and of course it would blow. The IV lines themselves were of cheap quality and air bubbles were a constant worry. And on top of that the nurses here don't like to wear gloves. Things have slowly gotten better but most of them still don't wear gloves. If you ask them to wear gloves, they get offended. And if you offend your nurse, that usually does not bode well for you, the patient. It was hands down the worst experience of my life. I felt like I was in hell. They were packing me in ice to get the fever down but of course I felt like I was freezing to death. They would yank the blankets off of me and I would scream at them in English and tell them how much I hated them (they didn't understand but at least I released some stress). It was hot outside so we had to keep the windows open which meant I could hear every barking dog, crying baby, all the loudspeakers mounted on tops of cars to shout out advertisements, the garbage trucks, everything. But there was no air conditioning in the hospital so we had to have the windows open or I would have suffocated. But when the fever did break, I was so miserably hot. I remember watching the clock on the hospital room wall and thinking that hours had passed but really only one or two minutes had passed. So that's when it all started but I only found out last week that it was Lupus with MCTD.

    I never really got well. I have never felt like my old self since then. Sometimes I have good weeks here and there, but never back to the way I felt before.
    Living at high altitude makes it very hard for me to get enough oxygen. We used to live at 2500 meters and this means that there is only 75% of the oxygen up there that is available at sea level. There is a neat online altitude oxygen calculator that will tell you how much oxygen is available for the altitude where you live. (http://www.altitude.org/air_pressure.php) We now live at 1828 meters and so the amount of oxygen here is 81%, with sea level of course meaning that 100% of the oxygen is available to the lungs. It makes a huge difference is you have lung issues to live at altitude, but moving down is not an option. Sea level is insufferably hot in Mexico. And we can't afford air conditioning. We tried to live in Merida (at sea level) but it was 40ºC in February! I could barely move, let alone walk or do anything useful. I sleep with an oxygen concentrator at night. It helps. I guess eventually I'll need it all the time.

    I'm trying Lyrica, 25mg, at night, in order to achieve deep sleep, because they say that deep sleep is when the body can repair itself. If I can get past the side effects, I think it will help. I also have fibromyalgia. I guess most of us do. I used to have burning feet syndrome but that has gotten better with the B12 shots that I take twice a week, also iron and folic acid supplements because I've been anemic for years. I get UTIs super easily, also sinus infections, and I've had pneumonia 5 times, but fortunately not since '06. I used to be strong. I used to mountain hike, carrying a 50 pound-pack, for days at a time, all by myself. Now I can barely carry my purse!

    I also don't seem to have the same enthusiasm or emotional highs like I used to. Nothing really excites me or fascinates me anymore. I started taking Wellbutrin (antidepressant) about 2 years ago. It has helped some, but I still feel a bit flat, like nothing is really fun anymore. Do you think others feel that way? I read that Lupus destroys the dopamine receptors in a certain area of the brain. Maybe that's why. I'm also allergic to 3 pages of medications, including all opioids, all anti-nausea, all anti-vomit medications, many antibiotics, most anesthesias----they all give me a movement disorder called akathisia. I think I'll start a thread on that and see what others might want to share about this. I so very much appreciate your sharing your experience. I feel encouraged just to hear from you. I hope you have a lovely weekend. I bought myself some Easter candies and a chocolate rabbit. Easter is not celebrated here with dyed eggs or candies or anything that's fun. It's a religious event only. I really do miss the joyful aspect of Easter. This is the first year in the ten years that we've lived here that I see Easter items for sale at our Costco. I hope eventually that the joyfulness of Easter will come to Mexico. I think it would be fun for the children, and the adults. Take care, Felicity
  8. x_claire_x

    x_claire_x Moderator

    Hi Felicity.. I am glad you have found us too..... I think you seem to have been diagnosed with the same as me...MCTD with Lupus predominating my other mixture is Schleroderma, myositis, polyarthritis and hypothyroid, just as an extra :0(.
    I am surprised you are not on any meds for your MCTD/Lupus. The first line of treatment is usually hydroxychloroquine...an anti malarial with low side effects that helps reduce the flares. Especially with your lungs in the mix.......I would think you need to be treated to stop the continuing damage to your body generally.
    As for depression...with your history I am not surprised you feel like that. It is true that Lupus can cause depression on an organic level; however most people also have to battle so hard for a diagnosis and to be heard that it isn't any surprise that we get 'naffed off ' !! Living with constant pain after all is depressing and it is hard to keep on top of those feelings when every day is a struggle with pain.

    I have family over Easter Sunday... for Late Lunch and a good giggle I hope. I think joy compliments religion and certainly being with those you love does.
    Happy Easter.....try and rest up and conserve your energy...pacing yourself is a huge must with these diseases.....take care, Claire
  9. Felicity

    Felicity Member

    Hi Claire, I too have hypothyroidism. I diagnosed it in 2011. The doctors in the US always said "your TSH is normal, there is nothing wrong with your thyroid." Then my sister, who has Hashimoto's, told me to forget about the TSH; it's virtually worthless as an indicator of thyroid issues. So I got the full panel done here in Mexico (you can order your own labs here) and my TSH was at the bottom of normal low and my Free T4 and Free T3 were practically non-existent. I started on Synthroid (T4) but it did nothing for me. So I switched to Cytomel, which is just T3 and finally my Free T3 levels stabilized to mid-range and I felt a lot better. I can't convert T4 to T3, so if I only take T4, nothing happens. T3 is the only one that is metabolically active so that's why I take only T3. I go along for a few more years thinking that "oh, it was my thyroid all along, now I'll get well" but I didn't get well.

    Then boom, I got super sick last June, like I did back in '06----the same thing, hair falling out, red face, fever, crushing bone and body aches, unable to walk without help, and wacky CBC counts. The Emergency Room doctor told me there was something seriously wrong with my cell blood counts and if they didn't stabilize, I needed to see a hematologist. So in November I went to a hematologist. He did a bone marrow biopsy. The results were that I was low in the precursors for all 3 blood lines---red, white, and platelets. He just said "you have anemia of chronic disease. Just take Procrit shots and come back in 2 months." I didn't take the Procrit because I knew I didn't need it. Procrit is to increase your erythropoietin levels and my levels are totally normal. Erythropoiten is made in the kidneys and it tells the bone marrow to increase red cell production. But Procrit can be very dangerous because it can easily cause thrombosis. (I used to work in the lab of an oncology/hematology clinic in the US, that's how I know).

    So then we said, gee, it's time to go to the big capital city (23 million people live in MX City), where they have "real doctors." And the rest is history. I got diagnosed with Lupus and MCTD. I already had Sjögrens and Raynauds, so he said I have "overlap disease." Now all the puzzle pieces are falling into place and everyday I'm having more and more of those "A-ha! moments." Those moments of epiphany were I look back and say to myself, so that's why I'm always gasping for air (even at sea level) so that's why I get so so sick with just a common cold, so thats why I get pneumonia easily, so that's why I was at death's door last June---it was a flare, so that's why the hot weather makes me vomit......

    The very sad and weird coincidence is, I got my diagnosis on a Thursday and the next day, Friday, my oldest daughter got diagnosed with MCTD, Lupus predominate. A few years ago I noticed a strange pattern of the blood vessels on her legs. I googled it and found out it's called Livedo Reticularis. I told her it's autoimmune related and that I was extremely worried for her. She said she gets it all the time, mostly when she's cold. she thought it was normal. I told her to please tell her doctor. She did, and her doctor just said "oh that's nothing." But it's not just nothing; it's a symptom of MCTD and/or Lupus. She's 37 and has been really sick for the past 3 years, and now has severe disabling fibromyalgia and had to quit her city planning job, which she loved so much but she was just no longer able to carry out her functions. Building site inspections during the winter months (cold and rain in Portland Oregon for 9 months) were especially crippling for her. She's also a copy editor so I hope she can regain enough function to work from home doing that because she's practically house-bound due to the pain and the horrible weather there, and she's depressed, of course. My heart breaks much more for her than for myself because the poor dear is only 37. (I'm 62.)

    We are in Patzcuaro where Easter is a big deal---hand-craftsman from all over Mexico come to Patzcuaro and the central plaza is full of vendors selling all their beautiful items. I got a hand embroidered blouse last night. The vendors---that's the fun part. Here's the icky part----the Silent Procession. For me, an Anglo-Saxon Methodist, I find the Silent Procession to be a tad, um, how can I say, uncomfortable to watch. Someone is carrying a gigantic and horribly heavy cross with Jesus crucified on it and Jesus has blood (painted on) running down everywhere, then some people are carrying a huge glass box with the Virgin Mary inside, then there are men in black robes with black hoods over their heads with holes cut out for the eyes and chains on their feet, (they look like executioners), then there are women in robes but they don't wear the hoods, everyone has to walk barefoot, and then there is another group of men who are beating themselves on their backs with ropes. And sometimes they're bleeding from all the rope hits. The ropes have knots tied in them so that it hurts more. I've seen the Silent Procession twice, and twice is my lifetime limit. I'm going to stick to all the wonderful vendor booths in the plaza with all the beautiful and colorful Mexican hand-crafted items for sale. Last night I also bought a happy rooster to put on the kitchen shelf, made out of corn husks and paper maché, about 4 dollars. The plaza is the happier place to be so that's where we'll spend our time, until the battery dies on my O2 concentrator and then we'll head back to the house to rest up and re-charge! I hope your Easter is lovely----hugs from Felicity.
  10. x_claire_x

    x_claire_x Moderator

    Hi... what a vivid description of the Mexican traditions over Easter...fascinating to hear about another Culture.

    Just thought I would quickly tell you I also have Livedo Reticulitis and also have always had it.. but it worsens when flaring... I have also had cold hands all my life but used them to good effect when nursing, the patients were very quick to get out of bed when they saw me marching up the ward !! MCTD is usually an overlap hence the 'mixed' in the title....but some get diagnosed with UCTD ...which is still a connective disease but they are not sure which one or which mix ...henc 'Undifferentiated'.

    Happy Easter and onwards and upwards to feeling better..... I hope your daughter gets to see a good Rheumatologist to check her out...sounds as if she should be......take care all of you...........Claire
  11. Felicity

    Felicity Member

    Thank you Claire I will definitely tell my daughter about your having had Livedo Reticularis all your life. I will tell her how yours worsens with flares, especially since lately she has notice it creeping up her thighs to her trunk. She is in such constant pain. I wish I didn't live so far away because I would go to her house everyday if I lived closed by, to cheer her up and help her out. I visited last month for 2 weeks and we had a good time together. We both love the new adult coloring so we spent lots of time coloring and talking. She too has always had cold hands, and me too! Your experience as a nurse reminds me of when I was a phlebotomist. The patients were already scared enough to get their blood drawn but when I started to look for the vein, they would jerk their arms back and say your hands are COLD! (Like I already didn't know!)

    My grandniece and grandnephew are here with us, their parents, any my sister in law and mother in law. The children are 6 and 3 years old. I decided that the Easter Bunny is going to visit this house. They know nothing of this tradition so this will be their first visit from the Easter Bunny ever. The Belgian chocolate bunnies I thought I was buying for myself at Costco---well, there are 2 children and 2 chocolate bunnies! What luck, right? And I brought back some Easter grass from the US last month, so now they will get a visit from El Conejito de la Pascua, the little rabbit of Easter. Everything here is all about being sweet and they do this by using the diminutive form with nearly every noun. I remember the first time I asked a visitor if he would like some coffee. My husband was a bit horrified because to them it sounds rude. I was supposed to say "would like you a little bit of coffee?" Un cafecito? Ito or ita, added to the end, usually is the way to make everything the diminutive. Sometimes it changes a little, like café becomes cafecito, but generally that's how it goes. So instead of just Conejo or rabbit, it should be el Conejito, the little rabbit. I think I'm going to have some Easter fun after all!

    Happy Pascua!
    Jackie Jubilee and x_claire_x like this.

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