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LisafromMass

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About LisafromMass

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  1. Thanks so much - this is exactly the information I needed. I will keep everyone posted!
  2. Hi folks, I hope this message finds everyone well. After some thought, I've decided I need to get a second opinion on what's been occurring with me. I'm hoping some folks on the forum can direct me to the best Rheumatologist in Boston...someone who is very familiar with Scleroderma and MCTD. Thanks in advance. P.S. A big and warm thanks to all for your kindness and support as I seek a diagnosis. I will keep you posted!
  3. Many thanks to all of you for your kind words and hugs. I can't express how much it means to be able to reach out to you folks. I've needed to hear (or read) those words. It's keeping me strong. You are all correct - I cannot predict what the future will bring. I do know that the idea of having any disease has opened my eyes to trying to live each day to the fullest. I just can't let whatever this is bring a halt to my life. I'm going to keep pushing forward and will try to do this group proud! I'm hoping to talk to my rheumatologist again this week. I had some pretty terrific joint pain last night. I'll keep everyone posted. Hugs back to all of you!
  4. Thank you so much, Amanda. I'm absorbing everything that you wonderful folks are saying to me and continuing to hope for the best. I was thinking today how my mom used to tell me that I will not get more than I can handle. I can only hope that she was right.
  5. Thank you so much, Janey. I was tearing up reading your post, just because it's so good to know there are people out there who truly care. I am trying not to let this get the best of me, but boy, it's a scary proposition. The thing is, I've never been one to take my life for granted, having lost my brother when he was 38 and I was just 21. I want to live, and live fully. I guess I just need to take things as they come. For now, I'm going to take your advice and get that cup of tea. Bless.
  6. Hello everyone, First, thank you for taking the time to read my lengthy post. I've been scanning this forum for a couple of days, but was hesitant to post before now. I'm sitting here in my home, alone on Labor Day, having spent the weekend thinking about all of the 'information' or there lackof, given to me by my primary care physician, dermatologist and rheumatologist over the past several weeks. I guess I should share my symptoms with you, first and foremost: Intermittent discomfort in my right elbow and left knee GERD (I was diagnosed with this years ago, and have been taking Omeprazole 20 mg 2x day, which keeps any symptoms at bay) Telangiectasis on the palms of both hands (not a bright red, more of a pinkish tone) Fingernails turn a slight blue when my body is cold (not sure if this is considered Raynauds - It's only my fingernails (or the skin underneath) and not the entire finger - also doesn't turn all three colors). Stinging sensation in the tip of my right index finger (of course it has to be the mouse finger) Strange sensation in the bottom of my feet and certain toes upon awakening (when I take a few steps first thing in the morning, it feels like a strange tingling sensation, then it goes away for the day). How it began - I visited my primary care physician with complaints of joint discomfort. They didn't seem to take my complaints too seriously, but agreed to perform some blood tests. Turned out, I had a positive ANA 1:160 SPECKLED and an ESR of 47 (I was recently re-tested and the ANA is now 1:80 SPECKLED and my ESR was 31). The doctor mailed my blood test results to me with a note that said "ANA and ESR could be indicative of an autoimmune disorder. Likely cause is recent surgery (my gallbladder was removed in May, with subsequent ERCP in July), as neither is significantly high. We can repeat again in 1 month if joint pain continues." Well, the joint pain continued to come and go and I pressed the doctor to run some antibody subsets - scl-70, anti-centromere, RNP and Smith were all negative. At this point, they referred me to a Rheumatologist. I visited the rheumatologist two weeks ago, at UMASS Medical Center in Worcester. She checked my nailbed capillaries with a special light and gel and said everything looked normal. Felt my joints and said things seemed fine. Asked me to return in January, to re-check hands (did not confirm or deny blue fingernails were associated with Raynauds). Only looked at one of the blood vessels in my hand and said it was fine. I followed up last week with my Dermatologist, and asked her to look at the palms of my hand. She confirmed that they were Telangiectasia and said, very matter-of-factly, that they were a symptom of Scleroderma,but mentioned that my Telangiectasia appeared to be "within normal limits." I was really confused by that statement - I thought any Telangiecatsia on the hands were a 'bad thing.' Of note: I am very fair skinned - not sure if that makes a difference. I asked her what changes I should be on the look for and she said, "well, that's difficult to put into words." Huh? I left there upset, confused and feeling defeated. Here, I have seen three different doctors, two of which are specialists...and no answers. This has been a very trying time for me. Part of me wonders if I am blowing these symptoms out of proportion and could this be Scleroderma at all? Everything I read on-line points to Telangiectasia of the hands being associated with Scleroderma. Could they be caused by something else? The doctors do not answer my questions. They are taking a 'let's wait and see' approach. Honestly, the scenarios that run through my head frighten me more than enything else. I am most afraid of becoming disabled and being unable to work. I've needed so badly to talk with someone. I have no immediate family left and my husband, well...he's been gone all weekend. I've never reached out to strangers before but I feel after reading some of these posts, that you folks can truly understand what I am experiencing. I'm really not sure where to go from here and I'm looking for advice. I'm on the cusp of my 40th birthday and I am scared of what may be awaiting me down the road. Thank you all for your time. I respect each of you for the struggles you are going through and I wish you all well.
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