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Posts posted by msjess

  1. On 10/20/2014 at 9:09 AM, paulf said:

    Thanks everyone for the responses. I'm still dealing with this issue and in fact it has gotten worse in terms of how my veins look on the backs of my hands. Vascular doctor was no help. I'm now trying to find a rheumatologist. Still not sure if this is an autoimmune issue or something related to my Bartonella.

    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. Hi Jess,


    Did you ever find out what was causing your hand vein issues? I'm dealing with something very similar with blue roadmap like veins on palms of hands as well as swollen and sore veins going up both index fingers. I've been fighting Lyme and co-infections for many years and I don't know if it's just another symptom manifestation or not. It's been going on about 6 months now and it totally freaks me out because it's so unnatural. If you learned anything new over what was causing yours or how you dealt with it I'd really love to know.






    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!




    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. 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?

  11. 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.

  12. 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 Immunoglobulins

    Sounds 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.

  13. 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

  14. 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.

  15. 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.

  16. 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.

  17. 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...

  18. 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.



  19. 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.

  20. 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.

  21. 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?

  22. 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.

  23. 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.

  24. 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

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