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  1. Hi, Nina! I agree with the others. If your GI thinks esophageal spasms are painless, you may want to consider 2 things: try someone else, or try to educate your doctor. I have found that my doctors like it when I come in with "new knowledge" from reading reputable journals (fortunately I am in an allied health field and have access to a teaching hospital with a great library) and, having discovered this website this week, I will take info from this as well. I go in with the attitude of, "I read this and it makes me want to ask these questions" or "What do you think about this?" or "I read this. Does this apply in my case?" and they are always willing to have a discussion. Finding a doctor who understands SSc can be difficult. I educate my family and friends about it, so why not help educate the doctors too! I also kept a journal of my esophageal spasms (what time it started/what time it resolved/pain level (on their beloved 1-10 scale!)/what I was doing when it started/how long after last eating it occurred. Doctors like data! My GI is a great listener. He gave me nitroglycerine (sublingual) that I keep with me at all times. It's a very tiny pill, and the bottle is very small (you can keep it in a wallet) so I can use it discretely. In addition, I take Imdur (generic: Isosorb) every morning (my Internist came up with that idea; she is also a great listener and, since we have the same tastes in reading material, we always discuss the latest books we have read) and it has reduced my frequency of spasms from 8-9 wk to 1-2/wk. You may want to ask your doctor(s) if that would be something worth exploring in your case. I hope the spasms lighten up -- I have found dealing with them (before getting the meds) can be difficult and scary since they mimic the symptoms of a heart attack. Soaring Eagle
  2. Hi all-- You helped me so much with my how to arrange O2 while flying question--I thought I'd try another. My first cyclophosphamide treatment is scheduled for May 29 at 11:30. I need to anticipate what kind of help and support I'm going to need for how long---as a single mom with a 4 year old. I'm figuring I need someone to pick me up and get me home. Once I get my son to bed, do I need someone to stay with me through the night and be there in the morning when my son wakes up? Assuming child care is handled, will I need someone to take care of me that next day? What about the the day after that? I know there are no guaranteed answers, and I gathered from previous posts that for most it's about 2-3 days of fatique. Any advice and input appreciated.
  3. Sarah, Thank you for letting us know whats going on. Please do take the naps. Naps are great! I hope your treatments go well for you! You will be in my thoughts! Sadie
  4. Hi all-- I am new to using Oxygen and need to fly. The rules and regulations sound confusing. One airline says you can take on portable compressors.....another says you can't because the FAA doesn't allow it. And then even if you make arrangements with the airline---how do you get past airport security? Anyone have any experience or clues about how to do this? Thanks
  5. Hi Jefa, Thanks for your greeting. I'm so happy your approaching 5 years recovery. I was thinking of starting a new "thread" asking if anyone else has had cancer and sclero as the doctors keep saying there's no established link, but the timing of mine was such that it appears to be more than coincidence. Have you ever seen this topic on the message board? I haven't had time or energy to search. I'll try to get a note in the "getting to know you" topic soon. Just had a round of chemo and got a bloody finger whacking it today (have pretty good sclerodactyly going on) so it will have to wait a day or two. Thanks again, Sheri
  6. Add me to the choking group too. I've choked on about everything listed so far (including "nothing"). I sometimes get my pills stuck and just have to hack them out. Along with the choking I 've had the cough, post nasal drip, laryngitis and EVEN the label "difficult to intubate" written at the top of my hospital chart. I'll ask my Dr about the "pulled up and tethered" description. He put me on allergy meds but they aren't really doing much. I just want to say how much comfort I'm finding tonight, my first night on this forum. I tried a chat room over a year ago and got scared off by hearing about symptoms I didn't have. Now I'm happy (not in a mean way!) to hear I'm not alone. Even going to a great research institution doesn't guarantee your specialist has seen all the variations.
  7. I have suffered from low back pain and swollen hands and feet to a greater or lesser extent over the past two years. I am new to this forum but was diagnosed with ovarian cancer 2 years ago and diffuse systemic scleroderma 18 months ago. Since I have the 2 diseases, I'm never positive which disease is causing the symptoms, and the neither the rheumatologist nor my oncologist act like the back pain (mostly lower, more when tired) is a common symptom. I did seem to have it even during my remission (I'm on my 3rd chemo regime now). I take pain meds as needed.
  8. I've been reading several message threads about choking as they have evolved. Now I have decided to put in my 5 cent's worth. I've had diffuse scleroderma for over 10 years now. Some years ago I found I was becoming increasingly hoarse, and periodically suffered from coughing fits. Although I've had some lung fibrosis in the base of my lungs almost since the word "go", the coughing didn't appear to come from my lungs. Someone said it was like a hair in their throat, which pretty well explains it. It was not till I had surgery in early 2004 for an unrelated condition, that something became apparent. When the anesthetist found she would be attending a scleroderma patient, she prepared for possible problems, and had another anesthetist and a helper. It was just as well she did! She had told me that she wanted to be able to give me a general anesthetic, as it would be nicer for me. If she couldn't it would be an epidural. So in case there were nasty things to be done she put me out first with a very strong sedative. She came to see me after I had woken from the surgery, and told me that I had VERY difficult endo-tracheal intubation. She couldn't use the usual method of making an airway to my lungs, and eventually after much trying, had to use a fiber optic tube, which went round corners! (I knew that they'd had trouble as under my chin was sore for weeks, where obviously someone's thumb had been pulling on my chin!) The reason for all this was as she said, my trachea (voicebox) had become "pulled up and tethered" as a result of the scleroderma! So I gather that this was somewhat blocking the straight path needed to my lungs. Because of this she recommended I get a Medic Alert bracelet with "difficult endo-tracheal intubation" on it. The surgeon also saw me afterwards, and remarked that I gave the anesthetist considerable problems! I was so lucky to have such a good anesthetist, who was also compassionate! She said that this problem could definitely have a bearing on my coughing fits. If I had reflux, the coughing would be made worse by it. But as I seldom have had reflux or heartburn it probably wasn't that. I have since found that post nasal drip (as Janey mentioned in another thread), was a big factor. Unfortunately one of my BP meds, Cardura, also known as Doxazosin, can cause rhinitis, (among other things!). Since I have been on it I always have fluid from my nose going down my throat, and at night it is usually the worst, particularly if I'm sleeping on my back. I often choke and cough for ages trying to clear my throat of this stuff! It feels as though it is stuck in the region of my trachea, and knowing what I now know about it, this is probably what is happening. Like others have said, I also get other things stuck, which make me choke. Particularly dry stuff, or large pieces of meat. I really do suspect, with me anyway, that having my trachea in a different position, courtesy of scleroderma, is a big factor in my coughing/choking fits. I wonder how many of us actually have this problem without knowing about it? I certainly never suspected it until my surgery! Warm hugs,
  9. Wound healing after hand surgery in patients with systemic sclerosis-a retrospective analysis of 41 operations in 19 patients. In systemic sclerosis, surgery performed electively does not seem to have increased difficulty with wound healing. Even larger operations, such as wrist arthrodesis or wrist replacement, can be performed safely.PubMed. J Hand Surg [br]. 2007 Feb 1. (Also see: Digital Ulcers and Raynaud's Treatments) This item was posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.
  10. Hi Pat, When you're a cat lover you definitely can't go without cats for long! You get withdrawal symptoms! I had my first cat when I was seven, and haven't been long without cat/s since. I was going to have 2 when I got our 3, but I couldn't leave the last lonely little one on his own. They are great mates as they've grown up together. The 2 males are stripey tabbies, and the female is a slightly stripey grey tabby; very dainty! Sam is the one in my avatar, and the other male is Pixel, as he was the smallest. Jenny is the female. When I first got the cats I wasn't ill, but unfortunately came down with scleroderma some months after getting them. I looked after them for their kittenhood, but when they were about a year I was too ill to keep looking after them. Luckily my husband likes cats, and has looked after them ever since. They all still like me though too! They are now nearly 11. Warm hugs,
  11. Hi felines4ever, Welcome to the Forum! And I'm sure from your user name you must be a cat lover! Do tell us about the "furry ones". I have 3 cats all from the same litter, and you'll see one of them in my avatar. All 3 are in a photo in my album. I particularly chose a sheepskin steering wheel cover, as my hands were so sore, I could hardly touch anything without wincing. The fluffiness of the sheepskin really cushioned my hands and helped a lot. Look forward to seeing more messages from you. Warm hugs,
  12. Hi Patty, I'm sorry you had an uncomfortable experience with the angiogram! All these horrible tests we have to undergo.......!!! Just two things I noticed when reading your post. First of all, for some time I was on 120mg of Diltiazem CD, a calcium channel blocker, for high BP. As a side effect it controlled my Raynaud's well. However, last year my BP started rising a lot, so my doctor took me off the Diltiazem and put me onto Norvasc, also a calcium channel blocker. I *think* the Norvasc may have started to bring my BP down a bit, but I started getting Raynaud's again in a way I hadn't had for ages. Because of this I asked to go back onto Diltiazem, and am now on 360mg per day, and also have to take Doxazosin, which is an alpha blocker to control the BP. But my Raynaud's is back under good control again. Sometimes we need to experiment with different drugs, even though they are of a similar sort. Everyone is different, and we react differently to drugs too. The other small thing which may be of help....... prior to having to give up driving, because I could no longer walk, I initially had severe trouble with my hands, both with Raynaud's and pain. To help with holding the steering wheel I purchased a sheepskin steering wheel cover. This helped far more than gloves, and it doesn't restrict your hands. I'm sorry I don't have any personal experience with prostacyclin infusions, but maybe someone else here has had them. As you have already had good results with them, point this out again to your doctors, and politely ask exactly why they won't do them again. I presume you haven't already had to go to ICU because of them?
  13. Well, got back from Mexico on Wednesday and got sick Thursday night. I had scratchy throat, dry cough and stuffy head with head ache that hurt sooooo bad. Today, day three, I threw up dry toast. I've since only eaten pop sickles. I think that since there is some drainage and such a head ache, I should see a dr. tomorrow, given that I already have a weak immune system, having been on Cellcept for almost two years. I just don't want something to go left untreated. It must be sinusitis...which would explain the headache that won't leave. I also went without supplemental O2 in Cabo and maybe not such a good idea. Another friend mentioned migraines I could be having. Am I being a baby for going to the dr. with a sinus infection? I have ILD too. Jen
  14. Wow I looked around and maybe it is a digital pitting. It's small, but there's a dent like pin head thing in the center of it...with a callous all around it. It's on the outer index finger. I have a lot of lung involvement and Raynaud's so it fits the bill. It is not painful so I guess I just need to keep it clean...any thing else I should do with it? I will share with dr. in march. Jen
  15. I have this rough spot on my finger and it could not be a callous by any stretch of the imagination...LOL. It is small and looks like a crater kind of. It doesn't have much feeling and not tender at all. Any one know what this could be if it is even sclero related? THanks, Jen
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