Jump to content
SCLERO.ORG
Sclero Forums

msjess

Members
  • Content Count

    60
  • Joined

  • Last visited

About msjess

  • Rank
    Senior Bronze Member

Profile Information

  • Location
    Maine

Recent Profile Visitors

2,793 profile views
  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
  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
  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, whic
  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
  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
  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 p
  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
  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.scl
  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-
  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. Acco
  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
  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 i
×
×
  • Create New...