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ez62

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Everything posted by ez62

  1. They dont inject you with anything, do they? Thanks!
  2. I have read that 10 to 40% of people with sclero have a negative ana. Just wondering how many here fit this category, and on what basis were you diagnosed-thanks!
  3. Very well said Shelley...thank you so much!!!
  4. Well, it seems to me all us "undiagnosed mostly lurkers" have wound up on this board for a reason. I know myself, I would much rather be hanging out on an eczema (sp) board if thats all that I thought was going on. Truth is I never heard of sclero or Sjogrens till I started experiencing all this very strange changes in my body and started trying to look into what these symptoms might be. I know on the internet there is probably a large group of hypochondriac type people who self "diagnose"with horrible and rare things all the time. I tend to think the other lurkers and I don't fit into that category. When my youngest son was born I knew almost immediately something was not right with him. Everyone including his doctors thought he was fine and it was implied I had some kind of depression going on that I just couldn't enjoy my baby. I knew absolutely nothing about autism back then, but as I tried to figure out what was going on with my son, as young as he was, the word kept popping up. Long story short, he is 4 years old and now has a diagnosis of moderate-severe autism. It took a bit of time for others, and the medical profession, to see something that I was seeing very early on. I'm hoping one of us undiagnosed might stumble upon a doctor who gets to the bottom of things, and that the others might be able to take that info and run with it. I have absolutely no doubt in my mind that I have some sort of mixed connective tissue disorder going on, none at all. Thanks to everyone for all your great help advice and your ear! Eileen
  5. Scary changes to my hands

    Hi-I have alot of changes to my hands as well. You can see a post towards the bottom of this page where I posted about palm changes. Actually though when I read you post, I realized I neglected to mention that my finger tips are almost always wrinkled and raisiny as well, and I have the indentation thing too whenever I hold something. All my bloodwork is negative. Best of luck to you, please keep us posted as to what your dr. says.
  6. I have not been diagnosed with scleroderma, but some very dramatic changes have ocurred to the palm area of my hand and I am curious if any of you have anything similar. My left hand is much more seriously affected. All of the tendons (I guess thats what they are) in the palm side hand have become very pronounced. The area below my fingers where the fingers meets the hand looks swollen with no lines. My pinky sticks out to the side really far which it doesn't do on the other hand.There are alot of little lines in the area where my thumb comes into the hand like it is being pulled tight.The middle of both palms has developed a very strange consistancy, like when I get it wet it feels like caqrdboard or something, kinda hard to describe but strange. Obviously with all these changes, my hand feels very weird, I can still do what I need to do but have to work at it more. Also does change colors a bit, sometimes white sometimes mottled reddish doesn't seem to be associated with the cold though. Definitely requires more effort to hold my hand out straight really feel resistance. I'm a little freaked because when I was looking up the palm thing online, as it has gotten so much worse, Im seeing a palm issue- cancer connection. I was just wondering if people with sclero have issues with their palms as well- thanks for your help, btw I also have face/skin changes and tummy troubles Eileen
  7. Gold medal for Gareth

    Hi Margaret, That is so wonderful...I am so happy that he is feeling better and able to participate in such a great event. I was wondering if, historically, Gareth has had problems with his gross motor and fine motor skills but has improved over the years. My little guy, who is also autistic, is almost 4, and has problems in these areas, and I am wondering if I can expect him to overcome them as he gets older. It is really hard to imagine that he would ever be able to participate in and type of sport on any level down the road, but on the other hand our kids surprise us all the time. Thanks for the happy update-Eileen
  8. Recap of our trip

    I have so many relatives spread out over NY that I tried to incorporate seeing them all in one visit. My husband is from upstate NY, and we go once a year to see his dad, but I wanted to visit my aunt and cousins on Long island, where I am from, and visit my oldest son(24) who moved to NYC 2 years ago.(absolutely did not want to drive into or thru the city) On Saturday the 7th I flew into Long Island with my daughter who is 14, and my son who is almost 4 (he is autistic).My husband would fly into upstate later in the week. We stayed with my beloved aunt M, and as always my aunt and cousins rolled out the red carpet for us. She has 6 kids and them, their spouses and kids visited with us on and off for the 3 days we were there. My uncle who is 83, is a gourmet chef and as usual the food was outstanding and plentiful. It was pretty much a nonstop party! The next part of our trip required taking the train from LI into NYC,(this was Tuesday) and then taking subways to my sons apartment. This was a major task as we had luggage, a stroller and my little guy to carry. Those of you who have been to NYC know the subways have lots of stairs and are not friendly to anything with wheels. This was also in some horrific heatwave up there and even though we live in Florida and are used to the heat, it was awful. My sons apt is very nice but tiny, so it was a little claustrophobic. I really wanted my daughter to see where her big brother was living, to broaden her horizons a bit. We found this great Irish pub around the corner from his apt that we loved so much we went there 2 nights in a row. In spite of everything we had a fabulous time. My little autistic guy rolled with the punches wherever we went, I had a tupperware container full of letters so he could spell his words and make his logos , and also 24 baby einstein dvds. That seemed to do the trick. On Thursday we went back to Penn station and took the train up to Utica, and luckily my son decided to join us, that made everything so much easier for me cause he kinda took charge of everything. The train ride up the Hudson was about 5 hours, and it was relaxing and lovely. There was a food car that also made cocktails and I treated myself to an absolute bloody mary. Delightful! My husband picked us up from Utica and he was very happy to see us, I think he had gotten a little lonely at home without his motley crew! About a half hour away is where his dad lives in the foothills of the adirondack mountains, a beatiful little village. Unfortunately his dad was put in a nursing home(temporarily for rehab) just a week before our visit and didn't seem to be feeling very well so that was upsetting. Still we managed to visit with some friends, one who lives on a beautiful lake where my son and daughter took a motorized barge out and fished for a bit. On fathers day we flew out of Albany into Orlando, and yes I was very glad to get home. I don't think I'd do the trip exactly that way next time, carrying the luggage and stuff on the subway was a bit much. But it certainly was an adventure and really great to see everybody. Thanks for reading, hope I didn't bore you all! Eileen
  9. Recap of our trip

    Originally from Lindenhurst, stayed with my aunt in West Babylon. My cousins now live in Holtsvville, Northport, and Massapequa and the rest are still in West Babylon. Thanks for your comments, and yes, I was exhausted when we got home!
  10. I am just curious as to what, if any, abnormalities have shown up in your bloodwork, and what you have been diagnosed with. Thanks! Eileen
  11. Well just returned from the new general practitioner and he was such a nice young man but seemed pretty out of the loop as far as autoimmune things go. He said scleroderma just affects the skin. Go figure! Anyway he ordered my bloodwork redone (its been a year) He said if your ANA tests negative, theres no reason to test for other antibodies cause they would all be negative...is that true? he said I could see my heart beating down to my navel cause I'm thin...he didn't even look at it...the thing is, I've always been thin and it never used to do that. It seems with stuff like this something bad has to happen before you finally get a diagnosis. He did say he believes either my preganacy with my son or all the contrast dye I was given 2 years ago has triggered all this. That was kinda validating and I do agree with that...finally a doctor admitting that pumping all those nasty chemicals directly into my vein might not have been a good thing! Thanks for you ears!
  12. Another dead end dr visit

    I did get a diagnosis from the rheumatologist which was vasculitis, based on a pathology report from the dermatologist. When I went back to the dermatologist, he said it was peri vascular and it wasn't vasculitis, like the rheumatologist read the report wrong. So I kinda lost faith in the rheumatologist, and plus didn't like the fact that he seemed uninterested in connecting the dots with my other symptoms. My husband went to this general practitioner and said he was a good listener so I thought I would give it a shot, but although being a good listener and a nice young man, it was unsettling to realize I know way more than he does about these things...mostly just from hanging out on this board. My symptoms include extreme skin burning and tightness around eyes and mouth, skin around mouth actually noticeably changing and kinda curling in, left hand tendons all thickening on the palm side and difficulty using and straightening that hand, moreso each day, red tight skin on forearms. I guess the fact that I see my abdomen pulsating so hard when it never used to is unsettling to me cause I know it never did that and I'm concerned something internal is being affected. They saw something that really alarmed them with my aorta, on a cat scan almost 2 years ago, then deemed it nothing. But now I am wondering if it was maybe the start of something going on there. So the bloodwork the rheumatologist ordered a year ago will be repeated and the general practitioner is referring me back to the rheumatologist I guess. He said he is a good rheumatologist and that I shouldn't let the misread path report stop me from seeing him again. So kinda going in a circle here. I appreciate you all so much, and I do apologize for taking up your time as I am undiagnosed. Thanks again for all your help, you are a wonderful group -Eileen
  13. Hi all, I am leaving for vacation tomorrow and when I get home have a visit with a new general practitioner. My husband has been to him and says this doctor is young and a very good listener. When he found out our youngest child is autistic he was very interested and asked my husband many questions about it. My problems began almost 2 years ago with chest pains,shortness of breathe, high blood pressure and erratic heartbeat. As a 40 ish woman at her ideal body weight this seemed to come out of nowhere. In the hospital they did a catscan and saw what they thought was a tear or something in my aorta. After numerous tests and going in thru my leg and shooting me up with lots of that dye they said they couldn't find anything wrong. I don't know if my problems began before that or that triggered it. Soon after came weird things with my skin, hands and mouth. My mouth looks nothing like it used to 2 years ago, even though my husband refuses to see this!!!And it constantly feels weird, burning feeling wet...and hard to talk, my teeth are all starting to overlap and get crooked and major furrowing going on. My right hand is very difficult to move and on the inside the tendons have all thinkened and its geting harder and harder to open and close and do things. Skin on hands arms face very stiff and tight. I have been to 3 dermatologists and a rhematologist. Biopsies of my skin came back as perivascular something or other but nonspecific. rheumatologist read the report and said it was vasculitis, dermi said no its perivascular. I really lost faith in the rheumatologist after he read the biopsy report wrong and also his seeing lack of desire to put any of my symptoms together...all my bloodwork was negative and he clearly will only diagnose via positive bloodwork or biopsy. I really feel like I have some type of mixed connective tissue disorder going on...there are so many issues people have on this board that sounds exactly like me and more and more with each passing day. When I look at myself in the mirror most of all...I can't find any other disease that would so dramatically change ones mouth area in such short a time. Right now what is also concerning me is I notice when I lie down, I can see my heart beating at my navel, really across my whole area down there. I know it didn't used to do this...so now I'm wondering if there really was something bad going on with my aorta 2 years ago. Anyway I am going to ask for new bloodwork and would appreciate and comments or advice you all may have. Thanks so much! Eileen
  14. Our Little Peanut

    Peanut, I am usually just a lurker on this board, but I have followed your story and visited your beautiful website. You are truly an inspiration, sending healing thoughts your way-Eileen
  15. I was wondering if those of you who feel your mouth being affected have trouble saying certain words. The other day a former neighbor told me on the phone her son is attending college for architecture. In the past few days I have shared this info with my family and some neighbors and I realize I can no longer pronounce the word "architecture"...at first I was thinking..."whats wrong with me, I can't remember how to say this word?" But then I realized it was my mouth that wasn't letting me say it, not my brain! Thanks for your help,Eileen
  16. Mouth Changes

    I am curious to know what type of mouth changes you have experienced. Is there any of you who have one side affected more than the other, either in feeling (sensations)or appearance? Thanks for your help, Eileen
  17. Curling Fingers

    My autistic son has had both physical and occupational therapy. For him at age 2, the physical was like climbing up stairs types of things, the occupational was putting coins in a piggybank type of stuff, fine motor skill things with his hands.
  18. new member

    I have eaten at that Emeril's, Dave. It is amazing!
  19. A long update

    Hi karen, I usually just lurk but your post struck a nerve with me. I have a 3.5 year old son who has been diagnosed with moderate/severe autism, and I myself am kinda in the same boat you are, very strange symptoms that keep evolving but no diagnosis as of yet. My left hand is becoming more swollen and resistant to use with each day.Like you, I feel my smile is very different, at rest my mouth actually looks crooked to me. I've had a burning tingling sensation in that area for a year now. My son spent 5 days in the hospital last month and it really knocked the wind out of my sails. Very scary when you have a child who can't communicate what is wrong or how badly he was feeling. Its like we are so busy dealing with our special needs children that we put our own health on the back burner. I can really relate and sympathize. I am seeing a new general practitioner in April, hoping I will get some more answers. best of luck to you,Eileen
  20. Hi everyone, hope you don't mind me posting, I have lurked here forever and have gotten to "know" all of you a bit...what a lovely group you are. Obviously this is not a board you would lurk on unless you have concerns. A short version of my story is...my symptoms started this past march or April, with sun sensitivity and this weird thing going on with my mouth. It felt so weird, numb, tingling in the corner and I alway felt like I was drooling but I wasn't. My mouth still feels strange, and now its pretty much my whole mouth. Also my mouth looks different, to me, like one side is receding into my face more than the other. Have lots of upper lip wrinkles, not sure whats aging or not, I am 45. My eyes and eyelids are always on fire and it hurts to close them. If I look at the lids they look wet cause they are shiny. ( I must ay even my husband insists I look absolutely the same as always) I am very sensitive to light especially flourecent. Sometimes I do get the feeling that my salivary glands are sore. My left hand has become noticably swollen in the palm area under the fingers and when I open my hand it feels like I am being resisted by a rubberband. Based on these symptoms, I have wondered if I have sjogrens, scleroderma or both. Anyway been to a rheumatologist and all my bloodwork has been fine and he has pretty much given me the feeling that he thinks I'm a hypochondriac. Anyway that changed a bit yesterday, when at my visit, he told me I do have an autoimmune disease, vasculitis, based on results of a spot taken off my bottom. He wanted to start me on plaquenil but I asked if we could wait while I did a bit of research. My feeling is...what else is going on here...I have researched the vasculitis and in light of my other symptoms, think its just one part of the puzzle. But he seemed more than happy to label me with vasculitis and leave it at that. Anyway, thanks so much for any comments or suggestions you can give, sincerely, Eileen
  21. Need Travel Tips

    Hi Beth, I've never posted on thos board before , but I am delurking to answer your question. My suggestion to you, is there is a certain kind of pass you can get, for a guest with a disability. When you go into a park, immediately go to the guest relations area, and they will issue this for you, for the lenght of your stay. I forget what the pass is called...I thing it is a guest assistance pass or something. I would bring medical documentation with you, but when we did this while vacationing with my autistic child, I just asked for the pass, and they didn't ask me for any documentation, even though I did have it with me. When we used this pass, basically it enables you to enter the rides from the exiting location, and there is hardly any wait to get on the attractions. Also it is accomodating if you are in a wheelchair or whatever. Depending when you are going in december, the parks will be packed and this pass will be invaluable to you. Lines can literally be 2 hours long during peak seasons. You only need to use this pass when you feel you need it. I would recommend googling Disney guests with disabilities. There is a great unofficial website that has a message board on this topic, and I'm sure you will get lots of great suggestions. Remember you will need a hat and lots of sunscreen. Have a magical Trip!!!
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