cantuse

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About cantuse

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  1. Thanks for the answers. It's strange how scleroderma affects people so differently. Thank you red for your answer in particular since I'm especially concerned about myalgia right now. Does Plaquenil help at all with GI related issues– or should I expect to supplement my diet with additional proton pump inhibitors?
  2. Still waiting on my official appointment with the rheumatologist, but recently I changed my Primary Care Provider because I moved last year. Anyways, turns out this new primary care physician has significant experience with connective tissue disease and re-ordered my bloodwork as a first step to see how my titres have changed. The results came back showing that my SCL-70 increased to 1.5 from 1.3 since six weeks ago. I know don't know how to make heads or tails of this kind of thing, so I'm wondering if people here can make sense of it. Also, she is suggesting that after I see the Rheumatologist, I try out Plaquenil. I was curious for any feedback on this medication. Thanks! I've been away because of my newborn. I'll try and put a picture of him up shortly.
  3. I'm hardly an expert... I'm still waiting on a proper diagnosis. But I can definitely relate to the leg pain. I've been having chronic leg pain daily for six months and before that I can remember painful episodes going back at least six years. I should also add that I've been dealing with meralgia paresthetica in my thighs for about that long as well. At least twice the pain was so sharp and acute, the doctors thought I had a thrombosis. As a result, I've had MRIs, X-rays, venous and arterial ultrasounds and even something called a 'bone scan'. All of which turned up nothing to explain my symptoms. Recently after tripping on the floor in my house and breaking my foot I decided enough was enough and I pushed my doctors for some follow ups. More MRIs of my legs and spine followed and all came back normal for my age (mid-thirties). The blood work however work was positive for ANA/SCL-70. Now I'm just waiting to start working with the rheumatologist and figure this out. I'm also dealing with absolutely excruciating shoulder pain that has similarly refused easy diagnosis. It's as if I absolutely destroyed my shoulder playing sports, but I've done nothing of the sort. Now my shoulder hurts just using a computer or doing simple housework. To be fair there are other symptoms I experience that lead me to believe I might have SD, but that's besides the point in this topic. :D From what I've read there seems to be either a significant similarity or co-morbidity between scleroderma and polymyositis; chief among the symptoms of polymyositis being muscle weakness and pain particularly of the pelvic girdle or upper thigh and the shoulders. You may want to review the information out there on it, since the article specifically cites pain in the hip extensors making rising from a chair difficult, which strongly resembles your story.
  4. Amanda, still waiting on appointments with the rheumatologists. :-/ At this point my determination to my symptoms as scleroderma is a diagnosis of exclusion. I've already had MRIs of the spine, leg and shoulders and everything checks out fine aside from the blood work, upper endscopy, etc. Because I'm somewhat confident of this, I'm been more or less content to wait until I see the doctors. The diagnosis would at least confirm to my wife that I'm not just always making excuses when I'm in pain or fatigued. :D
  5. I still don't have an official diagnosis, but I recently fell on the hardwood floor in my house and broke my foot. It's what finally prompted me to to take my nagging leg and shoulder pain seriously and get some answers. I also occasionally experience some kind of vertigo when I'm seated or lying down. The irony of the broken foot is that I was invited out to a dance hall that night but opted to stay home with the pregnant wife and avoid taking any risks. :wacko:
  6. Amanda, Thanks for asking. I got along with neurologist fairly well. My spinal MRI came back normal, which is essentially what I expected. Since I had already had a separate MRI of the affected leg just a few months ago, the neurologist had all the data he needed to conclusively state that there was nothing neurological that could explain the long-term leg pain I'm experiencing, nor the five years or so of meralgia paresthetica in the same leg. Since the only notable abnormality was the ANA and SCL-70 tests, he concluded that an 'underlying inflammatory condition... like a cousin of arthritis' could be causing or exacerbating my condition. After disclosing to him all of my other symptoms that are most likely autoimmune in nature, he referred me to a rheumatologist. I actually have two rheumatologist appointments booked, one with the rheumatologist recommended by the neurologist and another that I picked myself. I had scheduled the appointment with the independent rheumatologist after I received the lab results but before the follow-up with the neurologist. Since I pay through the nose for a good PPO-based insurance plan and can see specialists on a whim, I'm tempted to keep both appointments just so I can make sure I establish specialist care with a doctor I can communicate openly with. The disappointing part is that in Seattle, rheumatologists are apparently as busy as plastic surgeons in Beverly Hills, I can't get seen until the first week of August. I'm trying to be patient, but as you can see from my previous posts I'm rather excited by the prospect of identifying the underlying cause of some chronic problems I've had. I'm also concerned that I may have had scleroderma for some time and that it has been dormant/recessive for years but is now active again. I'm starting to notice the leg pain seems to intermittently manifest in my left thigh now, my shoulder pain similarly has started occasionally appearing on my left shoulder, and I've started noticing the ever-so-slight tingling and burning sensation running down the back of my forearm to the back of my hand. Based on how wildly divergent progression in scleroderma can be, it's hard not to be concerned. Worse yet, my wife is 38 1/2 weeks pregnant and the last thing I want her to do is going online and read about scleroderma. I've obviously shared some things with her out of anxiety, but I really don't want to distract her right now. It's nice to be able to talk about it here. Shawn
  7. Wow! Thanks for the response everyone. My followup with my neurologist is this afternoon, and unfortunately I can't see the rheumatologist until August! Thank you for the kind words Shelley. I definitely don't want to become too hopeful about a diagnosis for the reasons you described; it's just that the results of the blood work resurrected the possibility of addressing a variety of symptoms that I've been dealing with fruitlessly for so long. I've been dealing with palmar eczema for fourteen years, legendary acid reflux and esophageal spasms for a decade alongside numerous other GI 'nuances', numbness/tingling/itching in both anterior thighs for at least five years, and now a sharp pain in my rotator cuff and a deep ache in my thigh. Heh, oh wait, I forgot to add the transient trigeminal neuralgia that attacks a different side of my jaw twice a week. This is on top of the fact that I've worn bifocals for double vision since I was 29 and that my fingers and toes are freezing at all times unless its 85deg Fahrenheit. My acid reflux is to the point that when I'm unmedicated, I have acid reflux virtually every second that I'm awake and the smallest movement or I had virtually given up on treating the vast majority of symptoms above because I was tired of getting back results indicating that everything is normal. I've had three MRIs this year alone for the paraesthesias, thigh pain and shoulder pain, all of which came back normal. I had a gastroentroscopy six years ago that find irritation and little else. There's never been a cure for the eczema aside from Lidex and petroleum jelly and cotton gloves at night; which as you might guess causes problems with a person's social agenda. :D Noticing that my 60-year-old coworker could navigate the stairwell at work and manage a conversation simultaneously while I furtively gasped whenever I could because talking and stairs suddenly seem mutually exclusive. The leg pain got to the point I tripped over my foot and broke a metatarsal, in my own house no less. I figured I was stuck and none of these issues could really be resolved, let alone explained. And now,along comes my blood work. In addition to perhaps explaining the leg pain that I was seeking treatment for, it also bears a revelation, a possible indication of something that could explain these other issues that have insidiously demolished my quality of life these last ten years. It's hard to explain just how palpably excited I am at the notion of a diagnosis and thereafter support groups such as this one, and not having to feel alone or ever again conceal my concerns for fear of seeming a hypochondriac.
  8. Thanks for the responses. I am currently scheduled to see a rheumatologist in early August. I'm very happy to find such a warm community, and it was nice to chat with you Jo. I'm sure I will be around, and will definitely update as my situation develops.
  9. I arrived here after some blood work requested by a neurologist came back positive for ANA and SCL-70. I was seeing him about some deep-seated thigh pain I've had for nearly six months. He's already commented on the blood work that I will need to see a rheumatologist. I'm curious if its relatively normal to feel as though you've spent years feeling like a hypochondriac making mountains out of molehills because you feel like these seemingly disparate symptoms are interrelated, and yet none of the doctors or specialists are ever able to make definitive diagnosis. Eventually you start to shelf your concerns, thinking to yourself that they either are indeed psychosomatic or that they need to become dramatically worse before you can do anything about them. I know it's generally premature to leap from mere antibody results to thinking I might have scleroderma (indeed I read the Cyberchondria article in new user sub-forum before deciding to post), however there are vast litany of medical issues I've been experiencing for over a decade that weren't related to the leg pain and that I didn't share with the neurologist; things that in hindsight seem like they explicitly match up with what I've read about SD in the last few days. I just wanted to know if this sort of feeling of helplessness is common? Also, as perverse as it might sound, have others have found it a relief to have a diagnosis? To me it would be a relief to have a name for the condition and a community, and stop feeling like I'm dealing with this all by myself. I actually dread seeing the rheumatologist and having him flatly rebuke taking my story, symptoms or results seriously; because I would be back to feeling alone against all these symptoms. Is it important to have the first rheumatologist you see be familiar with scleroderma? I've read several stories of doctors refusing to consider it scleroderma, instead calling it fibromyalgia. This seems inconsistent with my reading that SCL-70 is generally associated only with diffuse and limited scleroderma and not other conditions. Is that true? How do you get them to stop shaving with occam's razor (i.e., really consider scleroderma or whatever is actually right, instead of only treating the low-hanging fruit)? Lastly, anyone know of any good rheumatologists in the Seattle area? There are a great many rheumatologists around here, but nary a one that I can find who has a listed, clinical interest in scleroderma. I'd rather find someone with a background in it, as I'm tired of finding specialists, who like hammers treat every problem as a nail. Thanks for reading, ~Shawn