Jump to content
Sclero Forums


  • Content Count

  • Joined

  • Last visited

Everything posted by msjess

  1. Miocean, I have Hashimoto's and just from looking at those lab results (which yay for the doctor who did it, as they did ALL the labs needed not just simple TSH) I would tend to think you're running a tad hyperthyroid or, perhaps, there is some damage to your pituitary gland. The Free T4 is high and that is the truest test of your thyroid levels. This link explains a bit: Lab Tests Online: T4 Test. You said you were diagnosed with Graves' disease? Are you still medicated for that? If not, why? My TSH levels at this time are extremely low as well (last checked around 0.18) and T4 was high last time they checked. In Hashimoto's, I have been told, fluctuations are possible (between hyperthyroid and hypothyroid states) as your body's immune system attacks the thyroid gland. Have you had antibody testing for thyroid disease done recently? It's possible you are active Grave's or Hashimoto's right now. Also, I think I have read that scleroderma can do something similar to your thyroid gland as well, causing tissue fibrosis? I also would ask your doctor or endocrinologist if they can do an ultrasound of your thyroid to look for any nodes.
  2. Just wanted to add that you've come to a great place for information. I hope you and your dad get the help you need in dealing with this illness. Make sure you and your mom take time to take care of yourselves as well... being a caretaker can take quite a toll on you. Good luck.
  3. Thank you Shelley. I ended up waiting and saw my primary doctor Thursday. She's urging me to try for disability and gave me medication for the joint pain; it is the generic of Arthrotec, which is diclofenac and misoprostol. The pain keeps changing or, rather, snowballing. It started only with the itching, then burning, then the joint pain kicked in, then the "vein" pain as I believe it to be, and now it is including pain in the fingertips, almost feeling as if the fingernails are being tugged on or pulled. My primary said she didn't think the vein pain was related to the phlebitis, but she is also not very knowledgeable about rheumatology/connective tissue stuff either. Right now, a day after starting the joint pain med, I do think it was somewhat helpful but right at this moment my right pointer knuckle joint has a very deep ache and I am constantly feeling that odd sensation in the ends of my fingers. The only way I can describe it is that someone is trying to lift on my fingernails, relatively gently, but still it feels strange. My doctor also is running a complete blood count (CBC) with and without differential (not sure what the difference is there) and is telling me I should wait and see the local rheumatologist in October before seeking help in Boston. She said Medicaid will be more likely to pay for a specialist once we've exhausted local options for doctors. Lastly I have again been feeling a weighty feeling in my chest, almost as if I can't take a deep enough breath. Last year I had it all summer, and began the summer also with pleuritis. Although it's been a bit of an anxiety-inducing addition to my symptoms, I am trying to keep my cool and wait it out, see if it's being aggravated in general by anxiety. I am trying not to worry too much about pulmonary embolism or the possibility of it, but I imagine my breathing symptoms would be worse if it was at that point. Truly appreciate your advice and direction here. It helps even to think that someone is reading or offering support.
  4. Shelley, I have considered that this may be related to the phlebitis. I really have. I also feel like it may be a septic arthritis of some type. It's scary how many different things it could be. The pain is intermittent today, like a burning shock in a toe or my finger, and then there is all-the-time pain in the joints that feels like they are swollen and infected... like the blood is wrong or poisoned. I have this bad feeling that all of this recent stuff is directly related to my IV Iron Dextran infusion (May 23rd), as the weeks of burning/itching pain started immediately afterwards, then the phlebitis and joint pain. I do know the second week-long course of prednisone did nothing to help it, and I am in worse shape today than yesterday. If I could get an accurate photo of what was happening, I could share it perhaps. I guess looking at my hands right at this moment I can see swollen veins in every finger that was NOT there just over a month ago. The tips of all fingers hurt, like pins sticking in them, or perhaps when I touch something there is broken glass in there. The joints are hot, red and swollen around the blue veins. There is no real rash, but I do have random small spots of skin where it feels hard under the skin, and other spots that look like tiny skin-colored round blisters. The joints in every finger aches, and the big pad of flesh at the base of my thumbs also ache. Feet hurt but not as much as the hands now. I also am getting weak in my hands. I can't hold a book for longer than a few minutes to read and sitting here typing is extremely difficult. If anybody has ever experienced anything like this I would be grateful for some advice. As I've said before rheumatology won't see me until Oct. 10th, my primary really knows nothing about any of this (she shrugged her shoulders and then offered an xray to check for arthritis and then did a lyme screen per my request), and dermatology said I need rheumatology. Also, vascular said that circulation issues don't happen with people my age, and she just basically checked my pulse in my wrists and ankles, then said nothing more beyond suggesting it could be a neuropathy related to carpal tunnel? Hematology as well said they didn't believe that the problems I am having are related to my IV Iron infusion but that I need rheumatology. I feel like the only way I can get someone to take me seriously is to go to the ER but even they may think I am just wacky for coming to the ER for something that primary care should be able to help me with...
  5. My son is on Methotrexate for Crohn's disease, and when he developed somewhat of a cough, his doctor asked if it was appearing the day he took his weekly dose. It wasn't, so we doubled up on his antihistamine with Nasonex and his cough cleared right up. Are allergies, seasonal or otherwise, even a remote possibility? I just wanted to share this experience in case it may help you some. Feel better soon. Jess
  6. Hi Jo, thanks for responding. I made an appointment with my primary again, as she wanted to see me in 2 weeks. The pain is a bit better today, but when it hits it's so sharp and burning. I saw an article on Hopkins Medicine Magazine about scleroderma and in it they describe the pain of scleroderma "feels like hot cement coursing through their veins," and honestly that is what this feels like. The vein is swollen and it feels hot, burning, sharp, and then almost numb, like I've got poison in there. Interestingly, I emailed a cousin of mine who I haven't spoken to in years this morning. She had Raynaud's when we were growing up too. And I asked her if she'd ever been through the rheumatology process. In fact, she had been, and she has been diagnosed with CREST Scleroderma. This is a cousin, who also is directly related to the grandmother (my dad's mom) who I believe had undiagnosed scleroderma. My mom remembered also that my grandmother, when hospitalized after having a stroke, had to have "bars" put into her hands so they wouldn't tighten up too much. I think she said they were towels wrapped tight and put in my grandmother's hands. This would go along with her having sclerodactyly.
  7. I'm sitting here kind of freaking because I am having intense burning pain in my left hand. It appears like the vein on the side of my finger into my palm is swollen, and that is right where the pain is coming from. I am wondering if this type of burning "vein" pain is part of scleroderma or not? My imagination is running wild that I am having a stroke, and the anxiety is going to keep me up all night. :( The pain is hot, almost like a stabbing pain, and it's right there in the vein. I also have it sporadically in the tips of my fingers and bottom of my feet. All of my veins in my hands for the past month have seemed to be getting more and more swollen (along with finger joint pains and phlebitis in my right leg). Thanks for reading and for any advice.
  8. Thank you all so much, and Marsha thanks for messaging me back and forth, I find it helpful to talk to someone locally... it's crazy how few rheumatologists are in Maine (1 in our part of the state now, I think), and the handful of others are 2 hours away. This is my minimal update so far. I have found out my Hashimoto's is causing me to be hyperthyroid (TSH of .18 this week). I saw my primary and followed up on the rheumatologist referral. She also screened me for lyme disease (negative) and took an xray of my hands (also negative for any arthritis). I finally have an appointment set up in October with the rheumatologist who is local. And I called the doctor who gave me an iron infusion (dextran) the week before most of my newer symptoms came out (the burning in extremities, itching, and sudden joint pain) and he told me they will try iron sucrose next time, but said I need a rheumatologist. I also finally got a follow up with dermatology this week and he told me that I need a rheumatologist, not him, lol. He thinks it may be lupus, but also mentioned mixed connective tissue disease. Apparently my ANA was again high - at 1:640 for the second time. DsDNA was negative, and he told me that all my other blood work (CBC stuff) was good. I am having the worst joint pain in my hands (fingers primarily, but also near the base of my wrist too some) and knee/foot pains. My primary put me on six days of prednisone (yeah, thanks lol) and said call me in two weeks to follow up. I think the prednisone makes it worse, though? Is that possible?
  9. Thank you everyone. My dermatologist took a look at my hands, and while he did suspect lupus, he told me, "I don't think you have scleroderma, although you may have it in 5 years or so." I am at a loss who to bring this up to. My primary knows nothing about autoimmune stuff, and just refers me out every time I go in to see her. The local rheumatologists are few (2 in my region of Maine) and all of my in-state options are exhausted I think. I am on Maine healthcare, so I don't believe they will pay for an out-of-state referral? I will investigate that option, if the other local rheumatologist in fact tells my doctor he won't see me. It's funny how this comes and goes. My hands and feet have been good past 24 hours or so, at least not burning pain, just mildly itchy and sore/as if it's in the muscles or joints of my hands. It's cooler today, raining, and not the hot/humid temps it has been. Do your symptoms fluctuate with the weather? Is it insane to think there is a connection? The only other idea I have at this time is that it's related to hypocalcemia, as a few of my recent labs have shown low serum calcium levels. I have read a bit about hypocalcemia causing burning pain in hands/feet. I don't know if hypocalcemia runs with scleroderma too or if it's just a "me" thing that I need to pin down. Maybe, perhaps, this all can boil down to my thyroid disease too.
  10. It's been a couple weeks since my last update. In the meantime, I have developed phlebitis in my right leg. So I was sent to a vascular specialist. When I tried to discuss with her the burning/itching fingers/palms and soles of my feet, which has been relentless for a month now, she dismissed my idea that it was circulation related. I feel in my gut that it is either a form of Raynaud's that I haven't experienced before, or possibly chilblains or even erythromelalgia. She took one peek at my fingers and dismissed me, saying, "People your age don't have circulation problems." I am 39, and actually have experienced what I believe to be Raynaud's since I was a teenager. My blood vessels in hands and feet swell up when I am experiencing this itching/burning in my hands and feet, and they tingle/prickle. I have really no sign of a rash, but the skin does turn bright red occasionally. I did test positive ANA last year, including positive anti-centromere which my rheumatologist surmised was not interesting at all or worth following up. I have struggled a year with strange health problems, starting with pleuritis last summer, followed with increased stomach pains, and increasing acne/possibly hormonal issues. I am in hyperthyroid status, up from Hashimoto's thyroiditis, where I am typically hypothyroid. Mouth sores. Ear infections. Now my hands are swollen all the time and incredibly stiff in the morning and they have had me crying because it hurts to grip pretty much anything. I also feel my hands are a lot weaker than they should be. My phlebitis isn't going away, and I have to wear compression socks for six weeks before they will consider anything surgically. I just wonder if I am having a form of vasculitis or possibly bad Raynaud's syndrome. But nobody has provided any answers yet - and I've seen my primary care physician three times over this, a dermatologist and now this vascular doctor. I still can't believe she said that I am too young to have circulation problems. Especially since I am obviously having them, and it's showing up as phlebitis? Oh, and to top it all off, the vascular lady told me to, "Stop reading so much," and when I was slightly upset she wouldn't consider helping me with my hands, I did cry. She then told me, "Most people are happy when they know something isn't wrong." ? Gah. It's not that I want to be sick. It's that I know in my gut something isn't right here and nobody is helping me!! I left the appointment feeling very frustrated, still. Meanwhile I still have not heard from the rheumatologist that supposedly got my referral - and I imagine he won't see me either. I already found out my former rheumatologist sent a letter to my doctor saying he won't see me again.
  11. Well, in case anyone is reading this, I do believe I have figured out what is causing my most recent problem - erythromelalgia. Apparently it is closely related to Raynaud's phenomenon. I imagine that it happens pretty often in scleroderma, as Raynaud's does. Perhaps you guys could include a page about it in your information on similar skin diseases. Here is an example of the raynauds.org site that explains it http://www.raynauds.org.uk/associated-conditions/erythromelalgia-em
  12. I have posted a few photos of my red palms and soles that itch and burn, and the skin discolorations on my arms primarily.
  13. From the album: Jess - no definite diagnosis

    About a year and a half ago, I noticed the appearance of a few tiny red dots on my arms... now I have literally hundreds, on arms, chest, face, legs... probably everywhere. I first thought they were petechia? but they don't go away...
  14. From the album: Jess - no definite diagnosis

    mystery bump - possibly a ganglion cyst? - is also seen here on my wrist (bottom left of photo)
  15. Thanks Shelley. I'm at this point still not sure what's going on. Went to see the doctor a few days ago and she thought I may be having an allergic reaction to the vitamins the hematologist put me on after my IV Iron infusion. So I'm now off those. Meanwhile, still having some itchiness, though not as intense, and incredible amount of stiffness and pain and some burning in fingers mainly. There is no rash really on my fingers or soles of feet, but I do see mottling of the color and some whiter round areas, which seems to coincide with the pains I get. I also had a cardiac stress test yesterday - where my blood pressure in the very middle went to 138/42? I'm guessing this is related to my neurally mediated hypotension, but now wondering if that problem is related to vascular changes in scleroderma too. I also have been reading about morphea? And wondering about the type known as guttate morphea. I have been noticing over the past two years or so that my arms/hands and chest are seemingly maintaining a tan year-round (although if you look up close it's more of a cobblestone appearance), and recently noticed lots of whiter spots on my arms in particular. I will take a photo and try and post it in my album later to see if you can take a look and give me an opinion. I have another call into the new rheumatologist's office to see if they received my referral yet, but haven't heard back.
  16. msjess


    Miocean, I hope you're able to enjoy some of your weekend. It seems like you have more than enough on your plate, and I hope it all settles down for you soon. Try to do something just for you, something that will take your mind off from the health-stuff for a few minutes, or better yet an afternoon or so. My thoughts are with you. Keep us updated.
  17. Thanks Shelley. I am currently suffering with this itchy-burning in my hands and feet, and it's keeping me awake all night. Seems the prednisone isn't touching it. It feels like it's just under the skin, and I do see very tiny bubbles of skin? I have looked up dyshidrotic eczema and it seems like that's what's going on here. I finished the prednisone already so I guess it's back to the doctor for me. And I called on the "referral," and apparently the other rheumatologist will look over my chart, but it's no guarantee he will even see me. I have already had one specialist two hours away make an appointment for me - then retract it a week later, saying he thinks I just have fibromyalgia. Another one told me I just have to take an antidepressant, when I am seriously only depressed BECAUSE of all the health stuff I'm dealing with, and all the uncertainty. And I've since been reading a lot on the other antibodies that I tested positive for, in addition to the anti-centromere ones - the anti-chromatin antibodies - which are also known as anti-nucleosome antibodies. Seems there may be a subset of scleroderma that does test positive for that antibody, although I'm no expert for sure, I wish a doctor would just take my bizarre complaints seriously for once. Just one caring doctor. That's all I want. In my mind, yesterday, I was cataloguing my problems these past few months and all of them - from the months of pleurisy to my huge mouth canker sore to the ear pains/likely ulcers to the migraines/trigeminal neuralgia headaches (ice pick headaches) to my on-again bouts with orthostatic hypotension and my chronic gi troubles - all of it seems to come back to this particular disease. I just can't understand why it is so hard to get a doctor to seriously look at me, talk to me about my problems and come up with a plan of attack. Instead, I feel like I am treading water, trying to keep my head above, but truly not able to advocate for myself effectively. I am just so frustrated. My heart goes out to all of you who have already been here, done this... it truly is disappointing to be treated so horribly by physicians who are supposed to be looking out for you, but just aren't...
  • Create New...