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About WestCoast1

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  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
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