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WestCoast1

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Everything posted by WestCoast1

  1. Wow, that so much good advice. I understand that this test is needed for so many, but I am not sure if I really need it. I already know I have severe GERD. I guess the doctors are just frustrated that the meds only work so much. I know that surgery is my next step and I really am not ready to do that. So do you still think that the test is necessary? Considering that there will still be some cost on my part and discomfort...all I will get are results to confirm what we know, I have severe GERD...right? I have had every test in the book, I am not sure why this is such a hard decision for me! :blink:
  2. Hi all~ I am so on the fence with this one! I have this test coming up very quickly and can't decide if I want to go through with it. I have read the treatment for what they are testing for, and I just dont want to do it, it sounds horrible....so why get tested for it! On the other hand, is it really necessary? Has anyone had it done and what comes next? I am not sure how my children will feel about mommy running around with a tube hanging out of her nose and trying to eat "normally" to get these results that they are looking for. I am just really confused. Any ideas?
  3. Hi Peggy and fam~ So I wrote and re-wrote this letter with some help. I wanted to be sure that it was professional and to the point. In the end I asked for the coding and details of my so called exam. All I got in the mail was a sticky note with a code on it. When I looked it up it says that 2 of 3 things should be covered in that list, one of them were VITALS. I now have re write him for the details of my visit. Unfortunately, the doctor can go back in and add all he wants to what did or did not happen during my exam, but I will just have to wait and see (and hope for the best). If there was no bodily "harm" done during my visit than he cannot be reported, and in his own private practice, there is no one to report his bad behavior to. I regret that this ever had to become part of my life. The last thing I needed was a negative experience. I really want to move on from this whole thing, but I really need to deal with it. As I sat in the waiting room, I watched many fragile people waiting along with me. If they are also being treated this way, who is watching out for them? Who is their advocate?
  4. Hi Morgan~ I have to say that I am so sorry for the pain you are going through! This kind of pain is something that doctors have such a hard time dealing with becuase there is no "evidence" other than our very real pain. First, I hope you are able to find a doctor that can really listen and try to help you. I also have this awful pain in my muscles. What I have been told recently by a doctor is that it is my brain registering false pain. I have had migraines for so many years that doctors have not been able to cure, so this pain cycle has gotten way out of control. I now have a pain similar to a fibromyalgia pain, but not fibromyalgia. They have recommended that I take a medicine typically prescribed for this and see if it can help. I can't say if this is what you are going through, but I really hope you are able to pin point the problem and find relief. Gentle hugs~
  5. Hi Pam, Wow, I am glad to hear that you found the source, BUT now comes the work it sounds like. Sorry you have to see one more specialist. I hope that you start to feel some relief soon! Hugs to you~
  6. Hi there, unfortunately, I am with all of you on this one. The skin on the heels are so cracked and painful that there are days I simply can't walk. On these days I put the extra large bandaids on them and coat them with a really good ointment. At night, I slather my feet and I have special thick socks that I wear over it all night. I cut the toes off the sock so that my toes don't get too hot. As far as walking on pebbles, I do believe it is a loss of padding. I wish there were a way to get it back...do they have botox for heels?
  7. Hello, I am sorry to hear that we all have similar experiences. I could have never fully understood that feeling unless it happened to me. I guess it is a very sad reality that we will be treated at some point in our care with total disrespect by someone you have to trust with you health and sometimes life! Today, I am over being angry, but feel very sad. I choose my doctors carefully and stick with them through thick and thin because I feel that I can get the best care this way. I cannot stay with this doctor obviously and really want him to understand how he is making his patients feel by not caring for their health needs. Do any of you feel that it is appropriate to write a heart felt letter to this doctor? Do you think that he will even care? Thanks~ WestCoast
  8. I really hate to complain about a doctor, but this time I have too! I so appreciate what most of the doctors have done for me in my life, BUT today I saw a neurologist for a new migraine that I suffered from last week. I haven't seen this doctor in about 6 months. You won't believe how this appointment went down! His nurse let me in the room, told me to sit down, and before I could turn around, slammed the door without another word...no vitals, no questions. When the doctor came in, he looked at my old labs, asked me what my blood pressure was, UMMM how would I know, his nurse never took it. So he said "OK, you tried this, this, and this, medication for migraines in the past. Try this one." I looked at him and asked him if he even wanted to hear about why I was here....about my new and very severe headache? He said "well all headaches are the same!". He is supposed to be a migraine specialist. Wow, I don't usually feel this angry, but I guess we all have our day. Thanks for letting me share. Tomorrow is a new day~ WestCoast
  9. Thanks for the support! This morning, my headache finally went away. I took 2 OTC pain killers and felt better. I may just give my neurologist a call since this was the first and worst headache of its kind that I have experienced. As for the stiffness, that has not gone away yet, and I am thinking it may not be related to the headaches at all. This morning I woke to knees that wouldnt bend or straighten for anything. Of course after about 30 min. they came back to life. Who knows...just another day in the life. Looking on the bright side, the sun is out today, I have no more headache and you all are here to share with. WestCoast
  10. Hi all~ I am sure many of you have had a migraine. Last night I had my first ocular migraine. WOW that was horrible. It lasted for hours. I fought hard to not go to the ER. My hubby was very supportive as I waked around and cried. There is no way to stay still while in that kind of pain. I had to take meds for my vomiting which made me pretty sleepy. After a long (and much needed) nap, it is finally gone. FEEWWWWW! :emoticons-yes: So after this was over, I am left with a small (normal) headache and major stiffness and joint pain. What gives? I tried to read up and see if this is normal for people with Scleroderma, but it wasn't clear to me. Has anyone else had a residual stiffness and joint pain after this kind of ocular migraine? Thank you~
  11. Hello All, I just wanted to post and let you all in on a helpful tip that I learned from volunteering at a retirement home. One of my tasks was to soak and peel all of the medication lables off of the bottles. At first I couldn't see the purpose for this, but as it turnes out, there are many ways that strangers can take that personal info and use it in negative ways. Those lables contain our full name, pharmacy number, RX number and of course the med that you are taking along with the dose. This does take a little extra time, but I think it is so important that we keep our identity safe these days. I save up until I have about 6 empty bottles, and then just let them soak in water for about an hour in a bowl. The lable usually peels right off, then I shred them. Best Wishes, WestCoast
  12. I had to chime in about fatigue. the first time I mentioned it to my rheumatologist she replied "So what is fatigue really?!...Don't we all have fatigue!". That was a great disappointment. Since then, and 2 rheumatologists later, I have had my ups and downs with fatigue but lately I'm really feeling it. I had to quit my job due to fatigue and pain. Now that I am working at home, I don't understand how I did those long hours just a year ago. I have been on a medication used for fatigue and other autoimmune illnesses, but it seems to have lost some of it's usefulness. It only helps for the stiffness these days. I do strength exercises in the morning where I do modified push ups off of the bathroom sink (just leaning onto the sink and pushing up). I can measure my bodies weakness or strength by how many I can do. I was up to doing 16, then 12 and now almost 10. I think that this total body weakness goes hand in hand with fatigue, for me at least. I am REALLY hoping that there is another medication that can help with this fatigue. Any ideas? PM me if so. Wishing you all the best~ WestCoast
  13. Thank you for your replies. While I am not happy to hear that others suffer this awful pain, I no longer feel like I am the onoly one. I looked at a map of the body and pinpointed the muscles that are so tender and for me they are the iliac crest and the sacroiliac joint. I still wonder if it is related sclero condsidering that it involves the connective tissues. I wonder if there is a treatment for this type of pain? hugs~
  14. Hi Fam~ This really isn't a serious complaint, considering everything else that could go wrong, BUT I am so sick and tired of the nagging pain in my back. I am pretty sure that a huge population in general has back pain, but how is it different in Sclero patients? For instance, mine hurts to touch all the way from the middle back to the lowest part of my back. Not only does it hurt to touch or push on, it hurts while sitting, standing and walking. I had an MRI of the spine years ago and it was as clean as a whistle. This feels more like all the muscle surounding that entire area. My doctors are always poking around my back to see how sensitive it is, (as I scream), and they have no answers for me. Am I the only one? Does anyone with scleroderma relate? I also wonder if it could be an overlap of other autoimmune dissorders...but again, not sure. What do you all think?
  15. Hi there, Thanks for posting your results. I was told recently that having labs done at the same place really helps the doctors compare results as time goes on. What kind of Methotrexate have you decided to take, the injection or pill? Hugs~ WestCoast
  16. Hi Piper~ So sorry about the GI issues. I have to say that that is one of the most disappointing feelings. I can endure pain and other things, but I totally understand that the queasy feeling tops them all somehow. I have recently tried a different med for that and had some success. I don't know why I have it, so I just treat it when necessary. I agree that it is something to address with you GI doctor. He or she should take it seriously and help you as much as possible. Please let us know how you are doing. Hugs, WestCoast
  17. Wow, interesting! Thank you. I will mention it for sure. You all rock :) Hugs~ erin
  18. Hi Forum~ Do you all find that Hyperpigmentation happens in certain areas of the body, or evenly all over? I have read over our ISN articles about Hyperpigmentation, and there are no specific notations about this on certain parts of the body rather than just evenly all over. It is not a huge deal, but my back has a horizontal band of dark skin at the waist line. It is a little patchy, but definately darker than the rest of my back. I was just wondering if this is a common hyperpigmentation involved with scleroderma. I also notice new stretch marks on my hips that I had not had before...and I havn't had kids for a very long time and I my weight has not changed. So, is this something that you would mention to the old doctor, or not a biggie? Thanks for being there guys & gals!!!! Hugs~ :) erin
  19. Hi there Connie~ Thank you for taking the time and courage to tell us your story. I am sure that we can all relate to some part of it. I can sympathize with your pain of a long diagnosis, and am so sorry to hear of the loss of your family member and kittys. I think that you have made a good start by finding a doctor that you can trust. With all of your moves, I would recommend that you keep record of all of yours test. (blood, exrays, mri's, ect.) For me, it helps to take it one day at a time. If I have a really bad day, I just keep reminding myself that tomorrow has potential to be a good one. Your journey with scleroderma will most definately be different that anyone elses, so stay in touch with us and ask questions. The more you talk about it with others who understand, the more you can understand how this illness effects you personaly. I always try to keep in mind that this illness doesn't define me, but it is how I deal with it that defines me. I look foward to hearing more about you. Take extra special care of youself. Big gentle hugs~ erin
  20. :) Hi and thanks for your comments! I did get labs redone, and no change. The nurse said that the GI doctor gave me the thumbs up to stop the methotrexate but is not sure if that was causing the antibody increase. I think that I will wait to do anything until I am able to get in with the new rheumatologist. My head is spinning from all of the medication changes. I need a vacation... anyone else?? erin
  21. Hello, I was prescribed this by my GI doctor and am not sure if I want to add one more med to my pill collection. He is using it to treat my autoimmune liver disease. Has anyone here tried it, and had success or side effects? I look foward to hearing your thoughts on this. Thank you, erin
  22. Hi there, My question is about Autoimmune Hepatitis. I have always had a higher than normal Anti Smooth Muscle Antibodies lab, BUT it was nothing to worry about since it was inactive. There were a few other labs that supported this, I can't remember what they were. I have been on Methotrexate now for a while and my Smooth Muscle Antibodies are 1:160 high (normal levels are 1:40). Does anyone know what this means? I know that it is higher than it has ever been, but I am not sure if it requires medication or a discontinuation of the Methotrexate. I am in contact with my GI/Hepatologist, but I only get to talk with his nurse, and it is very hard to communicate with her because I never seem to get a straight answer. For now, she says to come in for another lab ASAP and then she wants to prescribe a medication that is used for Crohn's, BUT I don't have Crohn's. I am so confused. :rolleyes: The only change in medications is that this doctor has taken me off of Plaquenil and added methotrexate. Thanks for your help!!! :) erin
  23. Hey Shelley~ Two thumbs up on the folate! :) I take that as well, and I think that it really helps. The nausea started before I began the Methotrexate...so we ruled that out. I do agree that it is much worse the day after my injection, but still the same as it was prior to starting the meds almost every day after that. It could be just one of those things that come and go. I will certainly let you know if we find a cause and I will keep hoping for a resolution. More hugs, erin
  24. Hi There, My gastroenterologist has been working with me on some stomach issues and nausea. I thought that it was just GERD, but he said that was incorrect. He has asked me to stop taking Plaquenil for a whole month to see if that is the cause. I am following his request, BUT not confident that Plaquenil could suddenly make me nauseous! I have been on it for years. I have just started Methotrexate injections, but that is not the cause of my daily nausea. We have no rheumatologists here in my area...they all have recently moved away so my Gastro has taken over my medical care until we get a new rheumatologist in town. He had me do a round of labs (CBC, SED rate, and bunch of others) to see if there were any obvious reasons for this, but none that stood out. As a follow up he had me do ANOTHER ANA, SCL-70, Ferritin and a few others I have not heard of. Has anyone experienced this? Does anyone here have random days of nausea where you can't imagine eating until absolutely necessary? If so, what have you tried that works? I can't take prescription since it puts me right to sleep. <_< Thanks for your help! Hugs~ erin
  25. Hi Summer, Deep tenderness is a frustrating kind of pain. I too have this symptom, but it has never been medically attributed to any one source. If I work too long or do too much strenuous work, I definitely feel that my body has been rolled over by a Mac truck. On days where I can take it easy, my lower back, arms and legs are tender and can't be touched. I have tried several medications that are supposed to raise my pain tolerance with no success. I have also been told that being in a constant cycle of pain can cause the body to "forget" how to break that cycle and will continue to be in pain even when there is no cause. I can't fully agree with that statment considering how true the pain is. I am sure you can relate. <_< We have done xrays & MRI's that don't show a thing. I have also had the muscle enzyme lab test which also showed nothing. My SED rate is steady and normal, so I just do my best to ignore it (easier said than done) :-) I do encourage you to see your doctor about your pain. Please let us know what you find out. Take care~ erin
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