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MicheleM

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Everything posted by MicheleM

  1. Vitamin D

    It has been ages since I last posted ... I found out almost a year ago that I was deficient in "D" rating a 23 whereas normal was between 40-50 on the blood test my doctor used. I started taking 50,000 icu per week but found that by day 4 I was as lethargic as before taking it. So we upped the dose to 2 x a week, 100,000 units per week. Seems to be helping with the energy levels. Just thought I'd throw that little tidbit of info out for anyone who hasn't been tested yet or has been tested and thinks the vitamin D is not making a difference. Could be if it isn't making a difference the supplement is not great enough. Here's another thing I've learned (the hard way of course) since last posting. Sclero can and did affect the "cardiac" muscles in the body. Not just the heart has cardiac muscles, we have many sphincters in our bodies that allow the body to function. For me it was my Sphincter of Odi which is located at the base of the common bile duct (pancreas/liver) that was the issue. The pain is incredible, nothing really to compare it to as it can be short lived or last for days. I had had a procedure last June to open the muscle by cutting it since it had tightened and basically closed not allowing the pancreas/liver to dump the enzymes into the small intestine for digestion. It seemed to work, but by December I was experiencing severe pains again and knew what that meant: the procedure didn't work. By February of this year the entire muscle had closed and surgery was my last resort. I had the surgery and am still recovering from it. The condition is called Sphincter of Odi Dysfunction (or SOD). If anyone out there is having heart attack or gallbladder attack like symptoms, but the heart is healthy and you don't have a gallbladder, please have your GI investigate this as a potential problem. The sclero did it's nasty job and almost closed my muscle completely by the time of surgery -- not a good thing for sure! If the enzymes cannot get out of their organs many bad things can happen and happen quickly. I'm sorry I didn't think to put this out there sooner, but it's been a rough go. The surgery to fix this problem is like going back in time to the 1970's where they cut you from stem to stern and move everything out of the way and then you get to heal from it. Which in turn means put me into major flare along with all sorts of fun stuff. I'm now finally able to walk without pain in my gut, and that's the best thing to do with upper abdominal surgery. The sclero flare, well it is what it is. I'm really doing good considering. Don't know if I'll be able to go back to work after all this is said and done as stress does cause pain in the area. We're talking disability, but I just can't seem to go there in my head just yet. Know I do think of everyone and I do hope you're having good days. We are all affected differently by this disease that connects us and everyday I think of everyone else who suffers. Thinking of you and hoping for good things to be happening in your lives! xo
  2. Vitamin D

    Thanks all for the kind words. Shelley --- I'm really curious as to how many others are in the same situation with the low levels of Vitamin D and how much they take per day/week to help combat the low levels. Everyday is a new one and hope is always a part of that! I'll try to be better at posting. xo Michele
  3. The Shingles Club!

    Since I'm posting tonight I thought I'd join the Shingles Club too. Just finished a nasty bout and hope they stay away for a while. A line under my bust, another along the left upper hip. Valtrex didn't work so a week later we went to the original "old" medicine and it did work. Thank goodness for that! Didn't even know there was a second med they could use! So glad there was! My husband had shingles of the optic nerve about 33 years ago and was blinded by it for 12 weeks -- very nasty virus!!!! But I am in good company!!!!
  4. Hi all. It's been a long time since I posted, but I went to see my new gastro specialist today and wanted to send an update. I had an endoscopy and an ultrasound endoscopy a couple weeks ago along with an MRI and an MRA (arteries ... new for me too!) and got the results. Looks like the Scleroderma is still plugging right along (albeit slowly thank goodness) in my stomach and small intestines. He saw the thickening in my stomach and found some benign polyps. Everything else looks to be in good shape and that was very good news. The doctors were thinking I had something wrong with my pancreas but that is not the case after review and I am one happy camper about that! The doctor is thinking that the pain I've been experiencing for the past 9 years may be the result of bacteria in my small intestine. He said that in Scleroderma patients the motility of the small intestine is afffected and thinks that may be cause #1. If he's right ... it means taking a "magic bullet" pill and life will get FABULOUS for me. He had another patient who had great results and we're hoping for the same for me. The second and possibly underlying cause could be Sphincter of Odi dysfunction. This is where the duct from the liver and pancreas drain into the small intestine for processing of the food from the stomach. Little science lesson here ... wooohoooo! Anyway, when it constricts there's pain and back up and "sludge" that develops. The sludge was found a few years ago during another procedure, so that leads us in that direction as well. He thinks I have type 3 which ... of course ... is the most difficult to treat as it more intermittent in nature. He's going to see if "the" specialist in the field (the specialists specialist) in South Carolina will take on my case and if not at least help us know whether to do another procedure on the duct to relieve it. As is the case with me and my family (we have to have a "Murphy" in our heritage!), my duct is abnormally small which of course makes the procedure a little more risky. If we "go there" the best thing to come out of it would be no issues .... however this one has the risk of pancreatitis and if you don't know what that means, I don't want to go there. Just know it isn't a good thing. Science lesson OVER! I'm hoping that this message will help someone else who's suffering the upper right quadrant pain that I've had. Best description would be gallbladder pain, but I had mine removed in 2000. Once diagnosed as GERD and many other things, I'm sure now it's just another chapter in my Sclero history book. It's taken 9 years to have found THE RIGHT DOCTOR for my gastro needs, but my patience has paid off. Just a few weeks ago I went through 2 doctors and the second one told me I'd have to live with it until my husband and I demanded to see someone who might help. We think it's paid off ... and thought so since the first moment. Sometimes you just know. When I was first diagnosed with Sclero I was told I'd be gone in 5 - 7 years at the most. Then I learned how wrong doctors can be and how important the support system and moreover how important one's attitude is. I may have Sclero, but I like to think it doesn't have me. With the support of friends and family I am able to live life fully and have learned what true friends are. We all get the emails about how we'll be there for one another, but it's a completely different thing to live with people in your corner pulling with you even if they don't understand what it is we're pulling against. Thanks for being there to listen to me through the bad and I hope you find this as good as I do. My gastro doctor has given me hope again. Isn't that what we're all looking for anyway? A purpose, and, in turn hopes of a bright future?
  5. Magic Bullet ... Good News! :)

    Hi all. Another update ... "As the Saga Continues"!!! LOL I got a call from Univ. of South Carolina. Seems Dr. Cotton ... the specialist's specialist ... will see me and wants to work on my Sphincter of Odi! He's already scheduled the ERCP (Endoscopic retrograde cholangiopancreatography) for the end of June which seems forever away, but in the scheme of things, well what's another month? We haven't nailed it all down yet, but I'm hoping this is the 2nd half of the good news I've been hoping for! Today was basically pain free ... just the end of the day & that's probably more stress related :) It's 2:30 am and I'm never awake at this time so I'll attribute that to stress as well! The only worry is - during the ERCP if my pancreas gets irritated and there's a 30% chance of that, well it's going to be a difficult situation. Dr. Suh here in Atlanta was very clear about the complications that "could" arise ... may be just a little apprehensive tonight! The thinking behind the Sphincter of Odi problem is the tightening from sclero and that's the last worry. Once it's cut (which is how they relieve the tightness) we know about the healing powers of sclero & scarring. I'm trying to stay as optimistic as my first post, it's just a little harder this time round. I'll have to take a Medical Leave of Absence from work & that's a bit scary, as no one there really understands what we Sclerodians go through as we "look" normal & for some of us it's more an internal battle than external. SO, wish me luck & I'm going to make a better effort at uplifting through the board. Hope all who read are having a good day with lots of smiles!
  6. Magic Bullet ... Good News! :)

    Susie, I am very glad that I could reach out to you! Mine has been intermittent and before seeing this doctor I had seen 2 other gstroenterologists in the same practice, one wanting me to swallow a pill cam and the other saying it was pancreatitus. Scans showed organs to be fine, liver not perfect, but I'm not asking for perfection!!! LOL Anyway, this drug is taking some time to work, but they said up to 10 days. I can say I have A LOT more energy and for that I am grateful! The other thing the doctor said was to limit protein intake and eat MORE FIBER. I know Gastros push that all the time, but I've tried to reduce the meats I eat and replace with beans and I do believe it's made a difference. So, I'm learning how to eat. Like it isn't a natural process (?) Maybe not what I was taught, but learning new recipes and that's always fun!!! Thanks for the posts. Michele
  7. Sweet - I used Provigil for a long while and like you found it to be a wonderful drug until it wore off, but it's way better than the drop of many other drugs you could use. Like you I only took 1/2 tablet & used it mainly to get through work at the time. I stopped because my heart was showing diastolyic disfunction, but that had nothing to do with the drug, but the drug wasn't a good thing in the respect that it could have been putting more pressure on the heart to function. Just an FYI. Some days I do miss being able to use it :( I'm glad for you that you found something to help!
  8. Muscle Twitching

    Maria, I have experienced the same tightening as you along with muscle twitching which can be very bothersome! And just to let you know ... my husband is 1/2 Finnish last name Maki! Huva Tuta!!!! I know very limited Finnish & always had hoped to learn before my father-in-law passed! However, that didn't happen however I do know a couple of words (obviously) and do make some recipes! So it really is a small world! I'm sorry that you've gone through so much with the doctors but they aren't a whole lot better in the US sometimes. Many people - including myself - have been told we're imagining the symptoms or it's depression or it's something. I tested positive & was then told it wasn't Sclero then it was then it wasn't and now it is again. I have lung, intestinal & some skin tightening (mainly in my face/skull) along with small mouth (even though no one believes me!) I'm glad you found this board and are comforted somewhat by those here who really care and all the good information you will find! I have found my doctors listen a whole lot more to me when I am aware of what is happening, could be happening or has happened and that all comes from reading and asking questions of people like those here who KNOW what we're all going through!!! Welcome, welcome, welcome and best wishes sent your way!
  9. Treatment for Fibro

    Sweet - I took this drug and after a few days everything felt like marshmallow ... don't know how else to describe it. The pain was gone but so was I!!! It took about a week to get out of my system and then I felt like me again! Maybe painful, but my brain worked as good as it ever did ... if it ever did :) Anyway, I didn't find sleepiness a side effect but the dizziness, well I am a blonde (or was!) was present! I hope it works for you and you get more relief by the time you read this!
  10. Today's Doctor's Visit's

    Sheryl, Hey! Just want you to know that my brother beat Type 2 Diabetes by carefully monitoring his diet. There are several books that show you how to get your sugars under control. Many things factor into your glucose! I found it great reading as I'm hypoglycemic. I always test low for sugar, but still don't eat a high carbohydrate diet as it surges the sugar to quickly for my body to metabolize! If it's not one thing it's another. I've decided to embrace the changes in lieu of fighting them. It's so much easier to live that way! Hope you are still enjoying your weekend!
  11. mouth issues

    I used to get the "gas" when I was little with my extractions! I remember the light mint fragrance! The only thing I know is you should be sure BMW is with you to drive home! Or maybe that's a given! One time I tried to walk out into traffic & my mom kept me safe! I smile remembering the memory!!! Hope you don't fret too much! It's only the dentist!!! :)
  12. Good News

    Just got off the telephone with Dr. Fisher at Emory Univ. Atlanta & he said my doppler of the heart was NORMAL!!!! Yeah!!! There had been talk about dystolic dysfunction on one of the previous tests and then I was put on Bystolic (drug in US from Belgium) and then the doppler echo & either the meds working and or the heart is OKAY ... what WONDERFUL news! He thinks the shortness of breath is coming from muscle exhaustion around the lungs ... hence sob, pain, hyperventilation ... but that's way better (I think :blink: ) than having the heart affected!!! :) I'm just SOOOOOOOOOOO excited!!!! :P Best news yet!!!!!!!!!!!! Let's have a party at my house!!!!!!!!!!! :D Back to normal now!!! If someone can tell me what that is!!! All I know is I am so glad to get and share such good news with all of you who have been there for me when I was so down and out & suffering so. Thank you for being a part of my world (even if I don't post ... I do read!) Love to all,
  13. Good News

    It really is fun having something positive to share & I'm with you smurffette - chocolate for any reason! However this is my husband's birthday weekend & it's going to be cheesecake for my calories - smells so good in here from baking! Thanks for all the positive feedback everyone!
  14. Eye

    I used to have the eye twitching and when it got bad enough (along with the headache that accompanied them days later) to see the dr, well it turns out it was my sign for migraine! You can say I was surprised! Took the meds & it all went away! Some people get auras & apparently my eyes twitch ... usually on the side where the headache was! I know it sounds weird, but for me it was the answer! Now I don't hesitate, so if you have any other sypmtoms with the twitching it may or may not be stress related! Not that we should all be as weird as me, but those of us with Sclero do seem to find the hard way to get diagnosis! Hope you all have a great weekend!
  15. Good News

    Lisa, Dr. Fisher is leaning towards muscle fatigue. I didn't really understand, but he said sob can be caused by many things. My PFT showed reduced capacity but transfer was normal. This is much different from past PFT's and he said I was actually improving! But he felt the constricture causing the sob was the muscles around the rib cage. I'll talk with sclero dr 8/12 & see where we go from here. I'm just so happy they don't think the heart is the problem!!! I do have PAH but Dr. Fisher said he wasn't going to worry until I got over 40 sustained - I'm at 34 - and if he doesn't worry, I don't worry. He's one of the best doctors I've ever seen who looks at the whole picture not just the symptoms presented. THANKS for ASKING the question! But more ... THANKS for CARING! You all are so good on this board!
  16. Good News

    I'm glad to be able to share! Thanks for caring so much!
  17. Home health care

    Albino -Sorry for the added stress in your life with your current situation. When my dad was deteriorating physically along with dimensia and my family couldn't handle the 24 hour care, we called in a nursing service. He was in assisted living and they referred us to several different services. The one we used was marvelous and gave the family a break - for us it was one day a week - but depending on what you can afford they can come in every morning, every pm, what ever your needs are they can compliment. We were self pay and it was about $50 for 3 hours in New Jersey. I am in Georgia and that was how I was able to help from a distance. He passed last May at 90 years old and we were happy he had such good care & good life! I hope this suggestion helps, if only to know there are solutions out there, but sometimes you have to get creative to work them out!
  18. Vet visit

    Hey Mary. I think you shouldn't be so hard on yourself. We all have things come up out of the blue & we do the best we can at the time & that's all we can ask of ourselves. I don't think your friend even thought about it after he was past as he was more likely in his own world by then. Maybe just saying "something" made a positive note in his mind. Certainly a rough day for him though. I think Truman had a good idea with the card. Hope by now you're feeling better :rolleyes:
  19. Prednisone tapering: weird symptoms

    When I used prednisone weight gain was a side effect. As for the hot flashes, well, I'm sure the metabolism is affected by the drug - hence the weight gain & the heat ?! We are all so different, but I know that prednisone creates havoc in my body!!! Can't say I'm much help :( Hope today is better!
  20. Ribs crushing lungs

    There are many, many other drugs besides methotrexate to use especially if you had any adverse reactions like severe weight loss. Cellcept if the sclero is in the lungs for example. Don't give up hope! Good luck with your teeth! Lots of ice afterward to keep that swelling to a minimum ... our doctor used a steroid pack for my kids that really helped them with the pain & swelling ... just a thought :) !
  21. I understand this dilema. I had a difficult time in the early years with this disease - even my dr didn't want to use the word sclero. I come from a family of handicapped people who offer no shelter from the storm. If they can deal with their issues, they figure I can handle my own and that has been really hard on me. I care about everyone around me and it's hard when they don't respond and I think that's what stops many of us from speaking out ... the fear of rejection because we are so different along with the disease not being well understood like RA or Lupus which have had more "press". I have learned to use the word "can't" even though it wasn't in my vocabulary ... kind of like drugs (so many of us never even took tylenol!) I have also learned to pick and choose who I will tell. I want those who I do tell to understand yet not feel sorry for me. Pity is the last thing I want. But, I do want those closest to me to know what I'm experiencing because it is such a heavy burden to bear alone. That being said, my family pretty much disregards me including my husband who says he wants to help, but never seems to be there when I need him or he tries to fix something he has no understanding of what it is. It can be so frustrating. I had to tell the people I work with (took me a while though) because we work as a team & if I'm having an off day they need to know so they can compensate. Now it's no big deal ... after almost 2 years ... but I am accepted for who I am and my limitations. So by telling them I ended up getting supported. So I think it's a mixed bag and like others who have responded it really is a personal choice we have to make moment by moment, day by day, situation by situation. Just because we say we have sclero doesn't mean sclero has us! Maybe that will help you!
  22. Ribs crushing lungs

    Hi there. I too am wondering what kind of drug therapy the dr wants to use & why you feel so strongly against using it ... side effects such as? I have "weird" lung issues that has my pulmo confused at times. My PFT came in with really good conversion ratio but my capacity was so low that my overall numbers were dramatically lowered. I also have the hardship on and off again with my "lungs"/chest wall so tight I end up hyperventillating and that is a whole other issue. I've been really good for breathing until I inhaled some 2nd hand smoke the other weekend - so be careful of your environment too! I would also get a second opinion on my concerns and if still conflicted a third opinion. They don't have to be sclero doctors to understand your feelings or aprehension about the drugs/treatment. I believe in going with my gut reaction (no matter what age) as I believe we have a sixth sense that triggers those feelings. I hope you post and answer the questions so maybe we can put our heads together & help you make a sound decision.
  23. Low blood sugar

    I'm also hypoglycemic & the six meals a day (yes I eat every 4 hours or so) make a huge difference in keeping sugar levels ... level! It's the only thing I know that helps & I sure do get grouchy when hungry!!!!! I hover around 150 in weight and try to eat "better" when trying to shed a few pounds! I don't know if this is part of the autoimmune, but since diabetes is I'm guessing it can go hand in hand with sclero. Hope you all are having a great day!
  24. Barium swallow

    Sorry you're so frustrated. It's never easy when you have symptoms and no one can verify! It's like that for most of us if that makes you feel any better. For the reflux another thing you can try is to raise the "head" of the bed several inches. My doctor originally said something like 8 inches, but we found ourselves sliding off the bed at night! So we reduced it until we weren't sliding and that made a big difference for me. The pillows are good except for me I don't stay up on them ... must be that sliding thing going on! Anyway, that was one of the minor adjustments that helped me!
  25. Jaw Pain

    Hi there. Gotta say I have the small mouth syndrome & TNJ which sometimes can cause migraines should anyone need to know! I too try to stay away from the dentist & am the only patient who DOESN"T have to FLOSS due to the tightness/overlap of my teeth. No one who knows me believes that I have a "small" mouth One time my jaw got stuck open and that wasn't good either!!! So no matter how one tries there's always gonna be one more crazy thing that's gonna happen to us! :rolleyes: Barefut is right - gentle stretching will keep the muscles/tendons moving which should make a difference in your daily experience! Hope this brings a smile to whoever reads!
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