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About msjess

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  1. I am replying to this years later but feel a need to respond. Paul, I came upon this post on Google when I was researching hand pain and bartonella. Turns out I have been clinically diagnosed as of this month with Lyme disease, Bartonella and Babesia. My Lyme doctor thinks I have had it since a teenager when I had what I thought was a spider bite (30 years ). Very interesting you have had the same pain. Mine continues to this day and right now is worse with Herx on treatment. I also have the sole pain horrible especially in my left heel. If you see this I am interested to hear how treatment is going.
  2. Paul, I really haven't learned anything new. I do know heat is related to my burning pain and I think it may be related to the Raynaud's in some way. I haven't gotten it yet as much this summer, but it sneaks up occassionally and is more of a twinge than the full-on burning I felt at the time I started this post. Also, I have a feeling that the Iron Infed infusion that I received early that summer had somehow "caused" this to snowball on me.... perhaps it triggered something in my immunity to overreact or maybe I had a bad reaction? Either way I won't be getting another iron infusion any time soon. So sorry you have been feeling this pain. I do know that Lyme disease can cause many pains similar to this perhaps yours is related to that Lyme? I was tested for Lyme when this first came up for me. Good luck.
  3. Hey everyone, I haven't posted in a while but I have a few things I am looking to get advice on. I am currently still without a diagnosis. I can't seem to find out if my rheumatologist even ran the centromere antibodies on me again... the only paperwork I see from his office says they were canceled with no reason given. I have a ton of things going on, right shoulder pain, right upper quadrant pain that is sharp at times and takes my breath, and it feels like I have to pee constantly. And I mean constantly! Oh, and it hurts to pee. So, right now I am scheduled for MRI for my shoulder, which orthopedic doctor believes to be due to impingement. I had a recent ultrasound of my liver that shows "increased echotexture that may be from fatty infiltration or fibrosis." GI just says I need to lose weight. :/ Meanwhile rheumatologist is extremely nice but really doesn't seem to be able to "put the pieces together" and figure me out. All he wants to do is run ANA tests, SED and CRP tests and since I am pretty normal (aside from elevated ANA) he shrugs it off and says to come back in six months. I am continuing to have hand swelling and pain, although the burning pain is pretty rare for me now, and my feet also hurt off and on similar to last summer. I have widespread muscle/joint pains that seem to come and go as they please but really make sleeping a challenge. I also have had cardiac testing done for palpatations and chest pains but nothing has really come of it. I have a couple of questions for you all. First, do you think that my pains in my liver area may be related to this increased echotexture of the liver and would you request a biopsy for autoimmune hepatitis if you were in my shoes? Also, do you know if non-alcoholic fatty liver is associated with scleroderma at all? I seem to remember something about the liver and fibrosis... actually fibrosis in any organ, right? Another thing, is this constant need to pee related possibly to scleroderma? Is this what IC feels like? It has been ongoing for more than a year, and when I went in for an ultrasound of my uterus over a year ago the tech told me that I hadn't emptied my bladder, although I had pee'd just before going in per their request... so I am retaining urine. Does it get more painful? And can it cause pain in the abdomen? Last, how do you deal with rheumatologist who is extremely nice but doesn't seem to get it that I want to find out what is going on with me? And now? How do you deal with this politely? I have no other alternative rheumatologist in the whole state who will see me. The first one I saw said I had drug-induced lupus, but never followed up, and the second one set up an appointment time for me but then refused to see me. And going out of state isn't an option now, because I am on state Medicaid. I am sure there is other stuff I have forgotten to ask but this is what I can think now, so tired. Thanks, Jess
  4. Thanks everyone. How interesting that the autoantibodies appear and disappear and may appear again. I suppose I am up for a few re-checks in the future, as my new rheumatologist seems very committed to help me figure out what's at the root of my aches and pains. It seems that nobody ordered that test regarding the pituitary and it may have even been a mistake (written into my report by mistake?) so they are doing the test for me so that I can have peace of mind one way or another. Of course I hope it was an error, but with the headaches I am having now it makes me wonder... Shelley, thank you for sharing that story, because I know how you feel! Last week I was reading about the adenomas (before hearing that those results may have been not even mine lol) and wow, with my TSH all over the place this year it made me wonder if that was causing a lot of the joint stuff and miscellaneous itchiness/heart palpitations etc. I am glad to hear your adenoma removal went smoothly and that it did help somewhat. If that is part of my issue too, at least it will be identified and taken care of right? I read that as many as 1 in 5 people will have had a pituitary adenoma in their lifetime! I had no clue it was so common. Do any of you with raynaud's also get vascular headaches at the same time? I seem to be getting a lot of these one-sided (primarily left side) headaches and they are happening a lot when I am exposed to cold weather. Maybe it's a coincidence, but it makes me think that they are vascular in nature due to constriction of vessels, just like the issues in our hands and feet. I will continue to pop up here, I am sure. And I will go read that info on plaquenil because that is still on the table at the moment. I just need to go through the hoop of a capsule endoscopy first, yay. Take care all. And have a happy Thanksgiving to those of you in the US. :)
  5. Hi Marsha, While I don't have a diagnosis of scleroderma, I do have Hashimoto's Thyroiditis and I am on a gluten-free diet due to the connections between ingesting gluten and autoimmune attacks on thyroid. I test negative for celiac on biopsy and also blood work but I do find a lot of my bowel problems are gone when I adhere to a gluten-free diet. I highly suspect that many of the autoimmune diseases have roots in our diets - all the chemicals we ingest daily can't be good for us. Take care!
  6. Just wanted to thank all of you for the support over the past months and to give a brief update. I have seen the new rheumatologist and he has agreed to take me on as a patient. He does feel there is something autoimmune going on with me, however all recent testing came up negative, including the anticentromere. I do have positive ANA still, and he has spoken to me about starting plaquenil. I am now in limbo waiting on a capsule endoscopy, which my gastro wants to run due to a question of crohn's disease (recent colonoscopy/upper endoscopy showed inflammation in ileum and duodenum). I also am waiting to hear back from my endocrinologist. According to my online chart I have elevated alpha subunit levels, which possibly may indicate that I have a pituitary adenoma/tumor. As yet I haven't heard what steps we will take to deal with that, but interestingly one of the symptoms of a pituitary tumor/adenoma is joint pains. I am curious whether any of you had scleroderma related antibodies show up, then disappear? I am wondering if that happens, wondering whether they may return or if that past test may have been a false positive. Thank you again for all of your advice. I am sure I will continue to lurk here as the months go on and a diagnosis becomes clearer. Take care.
  7. Hello folks, I have a question about joint involvement in scleroderma. Where is yours specifically and how would you describe it? I am currently experiencing joint pains in every hand and finger joint, with specific redness around every DIP joint (that closest to the fingernail). I also have noticed what looks like may be joint involvement in my toes on left foot in particular (the PIP joints are swollen and seem to be contracted on two toes now). Generally, I continue to have neck/shoulder pains that may be facet joint pains, and disc pain in the lumbar region, along with knee joint pains. What has been the pattern of joint pain for you? Also, does that pain wax and wane? I find that my joints are very stiff first in morning for more than an hour, maybe two, and then I get a slight reprieve unless I am using my hands a lot - then it comes back as more of a soreness/weakness. Thank you for taking the time to read and respond! ~Jess PS. I go to the rheumatologist finally in a little over a week. It seems like this wait has been forever!
  8. I finally had follow-up with vascular to hear the results and - surprise - I have Raynaud's/vasospastic disorder in hands and feet. I asked them to forward those results on to my rheumatologist, and they also agreed to do another ultrasound of my leg/phlebitis to check for any DVTs. I have had difficulty breathing lately and was concerned it may be related to pulmonary embolism. No DVT at all, at least not in that leg. I am having thyroid difficulties at this moment - very hypothroid with TSH at 8.34 - and am having nausea, palpitations/chest pains, headaches, and low grade fever. Hands still very much hurt - all joints are involved in both hands - they are red and are very stiff in the morning, but if I overuse them it turns into an achiness.
  9. Hi Missy, I'm sorry to hear of your multitude of symptoms. I can commiserate with your situation, as I am undiagnosed (ANA+ 1:640 homogeneous, with highly positive anticentromere ) as well. I hope a rheumatologist is helpful in sorting out your diagnosis. In the meantime, this board/website is a plethora of information and is very supportive when you have questions or need to vent. While nucleolar pattern tends to point to scleroderma diagnosis, I wonder if it shows up sometimes in mixed connective tissue disease? Here is a link to some of the information available here. http://www.sclero.org/scleroderma/types/systemic/overlap/mixed-connective-tissue-disease/a-to-z.html I wish you the best of luck in getting to the root of your health issues. And, as I have read from helpful contributors here, it is extremely important that you get copies of all your medical records to review, and don't be afraid to ask questions of your health care providers.
  10. Yes, the testing was pretty uncomfortable, especially with the hands at first. It was steaming hot... seriously, almost boiling. I didn't understand but the tech said they don't do the cold version of the test there. :-/
  11. Thanks everyone. I had the testing done this morning. The technician said my circulation looks good, but he did see what he would interpret as a raynaud's response in my feet. Of course, this will all be interpreted by the doctor too. One thing I didn't understand - the lab actually dunked my hands and feet in steaming hot water for the testing of each individual finger pulse? I keep reading about testing in cold water and am a little perplexed about this, thinking my hands may show a more exaggerated response with the cold. My hands afterwards, however, became very very red and slightly burn-y feeling (I'm wondering if it's an overresponse to the hot water, aka erythromyalgia) and I will bring that up at my follow-up with the vascular doctor. Have any of you had raynaud's testing done in very hot water, as opposed to cold?
  12. Hello folks, I am going on Wednesday to get testing done to either confirm or deny Raynaud's. The vascular surgeon I saw a week ago suggested it and set it up, after I told her about my upcoming rheumatology appointment. What should I expect when I go in? I will be going to vascular lab and they are performing tests on hands and then feet. Also updating my other threads: I have requested and received the majority of my medical records - but there were someone else's records mixed in so I have to find out if they have been stuffing my stuff in that other person's file as well. ha. According to that paperwork, I found out that I have reactive gastropathy (which upon further reading could have a differential diagnosis for GAVE), I have ulnar minus variation in both hands (which can be due to avascular necrosis?) and I have degenerative changes (moderate) in my spine/lumbosacral region. I also have chondromalacia in my knee. None of this had ever been brought up to me before in appointments? My primary also is listing under my current problems "lupus" and has been listing it that way for a year. At this point I am still waiting on my rheumatology appointment in October. Primarily experiencing joint pain in the wrists/fingers, with minor swelling/redness. The itchiness/burning is pretty much history, thank goodness, at least for the time being. I forgot to add that the recent stress testing that I underwent and ECG show that I have both tricuspid and pulmonary valve regurgitation. I don't understand why those two issues are considered "normal" on stress testing when I have history of fainting/dizziness, blood pressure issues, and feel my heart racing at times. I also read on a full halter monitor report that I have Premature ventricular contractions (PVCs) that happened 29 times in a 24 hour period. This was also noted on my stress testing (Rare PVC noted, it read). The other issue I saw on reading the full reports - the xray of my chest last summer when I was experiencing pleurisy - said that I have atelectasis in the base of my lungs? I looked this up and it also seems to run with autoimmune issues, and I wonder if this and the heart valve issues may occur in scleroderma. I am amazed that the doctors fail to give me the full info on these reports when I meet with them in person, and am a convert - I will always ask for the printed reports from now on. Thank you to everyone for reading my updates and answering my questions about scleroderma and the diagnosis process. You've all been so helpful.
  13. For Hashimoto's, the antibody is the antithyroperoxidase antibody? It's abbreviated TPO-Ab. And then there's the Antithyroglobulin (Tg Ab) antibody. Wikipedia also lists anti-microsomal antibodies as indicating Hashimoto's. For Grave's disease, on Wikipedia it says there are 3 antibodies: TSI, Thyroid stimulating immunoglobulins: TGI, Thyroid growth immunoglobulins TBII, Thyrotrophin Binding-Inhibiting ImmunoglobulinsSounds like you have found a good partner in health with that doctor and good for you for having the willpower to do the elimination diet. Interesting about the parathyroids...were your serum calcium levels off at the time? I imagine if you were on dialysis that would've played a big part in that. Adrenal gland failure is a biggie when talking autoimmune diseases. My son has Crohn's and has to take prednisone for weeks at a time to get flares under control, and we have to be very careful about withdrawing him from his dose to avoid adrenal crisis. If you've been off and on steroids to treat autoimmune stuff it is a very good idea to get your adrenals checked out. A year ago they checked mine with a ACTH stimulation test - it was relatively easy and took about an hour if I recall. Sure seems you have your plate full with medical stuff right now. Take good care of yourself.
  14. Miocean - as I re-read through your above comments about diarrhea I am wondering if any gi doctors have tested you for gluten sensitivity or celiac? I am on gluten-free diet to help with my IBS symptoms, although I tested negative for celiac, because it helps my stomach feel better. Also, I read some interesting theories that tie the ingestion of gluten to aggravation of autoimmune thyroid disease. Apparently the gluten protein is very very similar to the thyroid gland, and ingestion of gluten causes a brand-new attack with antibodies against your thyroid gland. Here's a link to some of that info: The Celiac/Autoimmune Thyroid Connection on About.com.
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