memeto2

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Everything posted by memeto2

  1. hi everyone,its been awhile since I have been on here,its good to be back.my question is if you are positive for having the SCL70 in your blood, does that mean there is a good chance that you do have diffuse scleroderma?i did go to the link on SCL70,but it didn't really say.thanks alot for answeringtake care memeto2
  2. hi nan,i have what looks like a varicose vein(bluish vein)under my left eye where you would have dark circles at.my daughter noticed it about a week ago,now it really bothers me,along with shrinking lips I now have a permanent black eye.lol well take care...memeto2
  3. i would definitly(sp?) go with the lawyer who is a nurse,if she is in the medical field she can better speak on your behalf.good luck!!!!! take care memeto2
  4. i have a friend at work that has it,she has had it about 2 years now.memeto2
  5. i was diagnosed at age 37,i had numbness in my hands and felt really tired,but I didn't go to the doctor for that I just brushed it off...until my leg swelled up and I finally went ,and they found I had a blood clot,and did blood work and discovered I had scleroderma.i have been to john hopkins and the dr there says I have limited,but my reumatologist says it is diffuse,i have sausage fingers,tendon rubs,my mouth looks differant because my lips are shrinking.im not as tired as I was this time last year,so things arent that bad right now.take care memeto2
  6. hello,well I had an appointment with my reumatologist thursday,i havnt seen him since I have been to john hopkins.he asked me what dr wigley said and I told him that he said I had limited sclero.well he doesn't agree.he said he feels it is diffuse because of all the tightening around my mouth and my fingers being so swollen.he said dr wigley has only seen you this one time and hasnt seen the changes in you like I have over the last 16 months.well now he wants me to go to pittsburg to see dr medsger.i am soo confused ,i dont know if I should go there or not.im tired of all these dr appointments,as im sure all of us are.i just dont understand one dr says im in remission and have limited and the other says I have diffuse and I should do something about it now ,he wants me to do that I.v study they have going on in pittsburg.can anyone give me some advice..please.thanksand take care memeto2
  7. thanks pam and heidi,yes heidi that is correct,it is how they are going to treat it.that is what has me confused,i really dont want to do the I.v treatment if I dont have to.i go back to john hopkins february 14 and I will have alot more questions for the dr.and yes I still might decide to go to pittsburg,a third opinion won't hurt.my rheumotologist used to work in pittsburg and knows dr medsger personnally.as a matter of fact he called him while I was there thursday.dr medsger told him he would have to see me and that I would have to have some lung involvement,which I will have my pft's done wednesday.so we'll see.i just really like dr.wigley and hate to go anywhere else.but I will..take care.memeto2
  8. Hi barefut, Yes, I also have a friction rub on my left hand. It runs down the side where my pinky is and you can feel it into my wrist. It's a crunching feeling when I open and close my fist. I was scared when I first felt it (about 4 months ago). I didn't know what in the world it was until I went to the doctor and that's what he said it was. I don't guess they do anything for them. Take care, memeto2 (melissa)
  9. hi everyone,a friend of mine whom also has scleroderma,but doesn't have access to a computer called me last night and was telling me she is getting little blisters all over her hands,she said that when sthey bust there is yellow pus,but they are not sore and do not turn into an ulcer.i have never got those before ,so I told her I would get on here and ask if maybe you all have got these and what are they?thanks for any input,she will appreciate it..memeto2(melissa)
  10. thanks elehos I will tell her..memeto2(ME;ISSA)
  11. hi everyone,well I changed my reum.doctor last week so I won't be going to him anymore thank goodness,he was so mean.well when I faxed him to release my medical records he called me on the phone at work as soon as he got the fax,and said he was not releasing my records to my new dr. because I owed him a bill of 50$so I hung up on him,crying like I always do when I deal with that man.so anyway I had an appointment with my new dr.wednesday and he asked why he didn't get my records and I told him why.he was furious and said for me to call the va,board of medicine and tell them and that it doesn't matter if I owe a bill or not he cannot keep my records.so I called them this morning and they said he cannot do that and to fax him a request AGAIN and if he denies they gave me a number to call to file a complaint..so I feel pretty good about sticking up for myself and wanted to share this with all you in case it were to happen....have a good day memeto2
  12. hi marie,you just dont know this doctor he is one in a million,very very nasty and doesn't care less!!i did call the virginia board of medicine and they told me that he had to release them,and to fax him again,and if he doesn't file a complaint on him.well I havnt done that yet,i just hate to get all stressed out over this.and I know he will be a complete jerk.and when I get cornered I freeze...but hopefully I will find the courage to fight back..thanks memeto2(melissa)
  13. is that the site that tells you if you qualify for disability?i remember going to that site.maybe you did send it to me,i hate to say this but I dont remember...thanks nan,your great!!!!memeto2
  14. hello and welcome,when I had ulcers on my fingers I used nitro cream,you put it on around the ulcer and leave it on 20 minutes,you can do this 3 times a day.it really helped me I dont think I would have liked the patch either having to were it to often.and yes my gums are receading pretty bad actually ,but I dont know if this is related to sclero.and for the pft my dr said if everything is ok than every year it should be done.take care.memeto2
  15. hi,i was wondering ,if you have limited sclero.do they automatically turn you down for it?i was going to apply thats when my local dr. told me I had diffuse,now im told by dr. wigley I have limited,dont get me wrong im very happy to have limited but I still feel terrible at times.congrats on getting it !!!!!!memeto2
  16. hi nan,i called doctor wigleys office and they called me back in about 2 days.but I had to wait 2 months before I was able to get in.and he does see new patients on thursdays.take care memeto2
  17. oh my ######!!!!!!!!i also get that,i have never mentioned it to any of my doctors,it is kinda embarrasing.yes it is in the top part of my bottom,and it splits open .it does heal in about a week but it always comes back.it has been doing this for about 4 months.i have had scleroderma now for 1 year.i am so shocked to read that someone else has this happen to them also.see,this site is wonderful....take care and let me know if you find out anymore about it and im gonna mention it to my dr. the next time I go.memeto2
  18. hi,when I called john hopkins to make an appointment,they sent me a pack of papers to fill out in the mail,and in those papers was a big list of motels near the hospitol.it also said that they would give discounts to people staying there due to being seen at j.h .so you could call there and they will send you the list.i didn't have to stay because I only live 1 1/2 hours away.good luck..memeto2
  19. hello everyone,today I have had 2 nosebleeds,i guess what made them pretty bad is because im on coumiden.i just want to know if you all think its because I started a differant pain medicine(celabrex).i have never had nose bleeds before and this has me worried.thanks memeto2
  20. thanks lynn for the information,that might just be whats causing them.thank goodness I didn't have any yesterday.memeto2
  21. hello,ive been on coumiden since october 27,my dose always changes ,im either to high or to low.the nose bleeds stop after a couple minutes but boy does it bleed!!and I just came back from the lab having my 2 week bllod draw so maybe they will call if anythings is wrong...thank you all!!memeto2
  22. hello,well I had a good trip tojohn hopkins today,dr.wigley is a super nice guy.he said that I have limited scleroderma not diffuse like I was told by a local dr.but he does suspect that I have lupus also,due to me having 2 blood clots in my leg within a years time.so I told him I had a blood test that r/o lupus,he says that you dont check for lupus by a blood test.can anyone tell me how they check for lupus if it isnt by blood??well anyway I have to have some test done and go back to him in february,he said he would be able to tell me more than.i feel pretty good about my visit with him.he also gave me a prescription to take to stop smoking,he said that I have to stop and I know that,so im really gonna try hard to quit.well hope everyone is staying warm ,boy is it COLD!!!!take care memeto2
  23. WELL I HAVE BEEN THINKING...THE DR.SAYS I HAVE LIMITED SCLERO.BY THE LOOKS OF MY SKIN.HE HAD NO OTHER TESTS TO GO ON BECAUSE IT WAS MY FIRST VISIT.WELL WHAT MY QUESTION IS ,IS LIMITED AS BAD AS DIFFUSE AND ONCE I GET THESE OTHER TESTS DONE (PFTS AND 2DECHO)AND THEY SHOW SOMETHING WILL THAT PUT ME IN A CATAGORY OF HAVING DIFFUSE?I MET A WOMAN THERE YESTERDAY AND SHE WAS WAS WALKING WITH A WALKER AND BREATHING HEAVY AND I ASKED HER IF SHE HAD DIFFUSE OR LIMITED AND SHE SAID LIMITED.I AM NOT TRYING TO BE NEGATIVE OR MEAN IN ANYWAY I JUST DONT UNDERSTAND HOW THEY CAN TELL.I GUESS I SHOULD HAVE ASKED THIS TO THE DR. BUT IT didn't HIT ME TILL TODAY...PLEASE HELP ME UNDERSTAND....THANKS MEMETO2(melissa)
  24. thank you all very much!!!i have a better understanding of all this.
  25. THANK YOU SO MUCH SHERYL THAT REALLY DID GIVE ME SOME STRENGTH TO STOP.IT IS SOOOOO HARD BUT I WILL TRY AND ONE DAY I KNOW I AM GONNA BE A NONSMOKER...THANKS FOR THE ENCOURAGEMENT!!!!