Scleroderma Information

Question:

Hi Steph, It took me about 2 years to get a diagnosis becuase many of the symptoms mimic other diseases. I urge you to get a new primary care physician and too see a rheumatologist concerning your scleroderma symptoms.  There are several things that have to come together before a diagnosis is made. A high ANA count in the blood is one of them. Good luck ! Keep us posted.

Response:

<I would like to know about your experiences with diagnosis.  Do you think there is a possibility that I might have Scleroderma despite negative tests. How were you diagnosed, and did tests reveal SD immediately.> I can certainly empathize with what you have been going through.  Paul (my sweetie) was ill for several months without a diagnosis.  It was very difficult, and hard not to think the worse.  He saw about a million specialists, and was not diagnosed until he finally saw a rhuematologist.  His ANA was negative early on, but was very high after being sick for about 6 months.  You mentioned flu-like symptoms, do you have a fever?  Muscle weakness?  Do your hands turn blue in the cold?  I hope you get some answers soon.  Sometimes not knowing is the worst.  By the way….after being very ill for nearly a year, Paul is doing wonderfully now. Take care and keep in touch with us, Leanne

Response:

Hi all, I’m new to this lift and have been reading along. I believe I have scleroderms but not the best of  primary care physician and I was wandering if it took a long time for you all to get a diagnosis. I’m beginning to feel like a stuck pig here and not getting clear answers. Since this whole auto-immune thing is new to new to me, that makes it even harder because I don’t know what questions to ask. What I do know is I’ve gone from a fairly highly paying job down to disability and that is the hardest to deal with, and the awful exhaustion, given I have no diagnosis. I’ll be glad to listen to any wise advice. Steph

Response:

Well Steph it took me forever to get an accurate diagnosis. I had never even heard of scleroderma before the doc told me I had it.  I could not even pronounce it.  I suggest that you ask for a referral to a rheumetalogist soon.  They are the most likely to look at you as a whole person who potentially has SD. What symptoms do you have?  Did you go on a state disability plan?  The reason I ask is because the state or the federal disability plans (SSDI or SSI) usuaslly require an ICD9 code (diagnosis) for the record.  I was curious what the doctor put down for you in terms of disability. The only other advice I can give you is to hang around the newsgroup, post questions you have and be your own best advocate.  ASk the doctor lots of questions till you get an answer.  If the doctor doesn’t llisten to you or doesn’t have the right qualifications get another one.  If you could see a rheumatologist that has some experience  with scleroderma that would be best.  Call the Scccleroderma Foundation  for more info.  They have an 800 number but my brain is not remembering it right now.  I  think it is 1 800 722 hope  or maybe 1 800 772 hope.  Sorry I can’t recall right now but they also have a web page. Good luck it is a difficult process. — Eileen McDermott, CA If you see someone without a smile give them one of yours ! – Hide quoted text — Show quoted text -Orion21 wrote in message <19981115014041.25503.00002…@ng147.aol.com>… >Hi all, I’m new to this lift and have been reading along. I believe I have >scleroderms but not the best of  primary care physician and I was wandering if >it took a long time for you all to get a diagnosis. I’m beginning to feel like >a stuck pig here and not getting clear answers. Since this whole auto-immune >thing is new to new to me, that makes it even harder because I don’t know what >questions to ask. What I do know is I’ve gone from a fairly highly paying job >down to disability and that is the hardest to deal with, and the awful >exhaustion, given I have no diagnosis. >I’ll be glad to listen to any wise advice. >Steph

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Response:

>Maria Maynard wrote in message <712qvk$of…@barcode.tesco.net>…

Maria, I was in pain for years and blamed it on moving working, etc.  My Raynauds was always there and I blamed it on staying to long at the skating rink as a child and getting overly freezing.  Diarrhea became severe 27 years ago with a pregnacy.  I finally went to my GP and asked him if I had bone cancer as I had severe pain in my ribs , arms, and it rotated around.  Sometimes the underlying muscles in the rib area felt and still does, go through my torso and to my back.  My GP did blood tests and then reffered me to a Rheum. (who was booked for 3 months , so I took who ever was available).  This all happened in ‘95.  I have limited SD, CREST, big time Raynauds, some reflux (sml meals helps as does prilosec) and I also have Fibro.  I also have TMJ with a joint that is so mis-shaped and needs surgery, but I will wait untill the end before I do that. Too close to my brain(LOL…might make me more forgetful ).  In medicine, everything takes time.  We all want instant answers and instant relief.  Be patient, and I would try to see a Rheum . sooner than your appt. in January(I think I read that was your next appt).   And some Drs. can make you feel uncomfortable and intimidated.  If that should happen, change Drs.  And get as much information as possible and highlight your concerns reguardless where you read information.  It is important.  And it is many times helpful to the Dr.  Nothing worse than getting home and thinking, I wish I had asked "that" question. Just remember what we tell our kids.  There is no such thing as a "stupid question".  That goes for us also.(speaking as an adult ). Stay with our group.  There is so much support, and also, someone might mention a problem and you say to yourself, I have that same feeling or problem.  We can’t diagnose or treat, but we can exchange ideas and it is so helpful in discussion with your Dr. Good luck and hope you are feeling better. Let us know how you are doing, and we’ll let you know how we are doing.(LOL) Wendy

Response:

Maria, Good I am glad the support helps!  You are not crazy, you have pain and physical problems.  Take care of yourself.  It is times like this to be your very own best friend  Easier said than done I know but I keep trying. Eileen McDermott, CA If you see someone without a smile give them one – Hide quoted text — Show quoted text -Maria Maynard wrote in message <714520$3g…@epos.tesco.net>… >E. McDermott wrote in message … >>Maria, >>I was diagnosed in 94 with SD but I had had various symptoms for 3 years >>prior and some symptoms (Raynauds) since a teenager.  I am 27 now, look >like >>I am 17, that means I can’t even buy a lottery ticket if I don’t have ID >and >>feel 57.  My suggestion is be persistent in communicating with your docs. >>>Thank you for sharing your experience.  This is providing so much >psychological support.  I don’t feel as if I’m going crazy anymore, and best >of all, I now have so much courage to push for further tests.

Response:

Maria, I was diagnosed in 94 with SD but I had had various symptoms for 3 years prior and some symptoms (Raynauds) since a teenager.  I am 27 now, look like I am 17, that means I can’t even buy a lottery ticket if I don’t have ID and feel 57.  My suggestion is be persistent in communicating with your docs. They need info from you to help dx and you need info to have resolution. THe 3 years before I was dx I was very depressed.  I had no skin involvement so I did not look ’sick’ but I was tired, achey, sore, had reflux, my hands ached and I was beginning to think I was crazy.  I had to learn to trust my mind and think I was well while acknoledging the pain I had.  It is a frustrating time and I will hope for the best for you. Eileen McDemott If you see someone without a smile give them one , it could make their day! Jan Gilbertson wrote in message

<7130vk$t4…@holly.prod.itd.earthlink.net>… – Hide quoted text — Show quoted text ->Maria, I was dx’d by blood tests the first time I went to a rheumatologist >but from what I have learned since then was that I was lucky.  However, I >had been going to a GP before then and he had no idea.  So it takes the >right doctor at the right time.  I know how you feel about needing to know >what is wrong.  I had doctors almost convincing me that it was in my head. >Then right doctor right time and bingo there is a dx.  I had even gone thru >the correct exam before but nothing. >Keep your chin up and keep looking.  The answer will come when it is time. >Jan

Response:

Maria you are welcome for the support. We are here anytime. I hope you visit us often here. — Love and Hugs From Sherry Messick Surviving Scleroderma http://www.SclerodermaSupport.com "Get Up, Stand Up and Fight to survive because Scleroderma Kicks you when you are down" "We are all Beacons Of Light for Each Other " Oprah Winfrey Tomorrow is promised to no one. Learn to say ‘I love you’…. Any way you can!          /       ____/_________       //////\    Have a Bewitching Halloween!!      ///  Q   Q         ///     U        //     ___/    

Response:

>I would like to know about your experiences with diagnosis.  Do you think >there is a possibility that I might have Scleroderma despite negative tests. >How were you diagnosed, and did tests reveal SD immediately

Dear Josie, Would you have the option in England of being seen by a rheumatologist?  This sort of specialist in the US is trained in diseases such as SLE and Scleroderma.  I was originally diagnosed by a dermatologist.  He performed a biopsy which showed scleroderma.  My blood work was not showing anything for over a year into the disease.  After the biopsy report I was sent to an excellent rheumatologist and he confirmed the diagnosis by examination of my skin.  We all present differently.  Hopefully what you are going through will resolve the same way it appeared. Regards  Tamara

Response:

> The medication for the fungal problems is Sporanox-Pulse 28capsules 100mg > two twice a day for 7 days each month for 3 months.

I hope it helps. Keep us posted along the way. > Since 1991, I have had two operations on my right jaw joint, one removing > the cartilage, the other cleaning up the joint again.  I’ve also had an > osteotomy on my upper face/jaw due to a poor bite.  My mouth opening is very > small and there are radial lines on thin lips.   I have lost nearly all of > my lower back teeth and some of my upper back teeth.  

Ouchie, I haven’t suffered anything like you have described above but I can relate to jaw pain. I also have TMJ (Temporal Mandible Joint) problems. That in itself is so painful at times I could scream so I can just imagine the pain you must have indured. If you ever feel like screaming feel free to post a message with only the words SCREAM or YELLLLLL. haha. We will understand I promise. Many people with scleroderma suffer from Microstomia (Small mouth) so I am sure others can relate to this. You might benefit from visiting a page I have compiled on Skin manifestations with scleroderma. www.sclerodermaSupport.com/med-skin.html >My hair is very thin > and will not grow anymore.

I can relate here big time. Although my hair is growing back now I did lose my hair due to chemo therapeutic drugs I have taken. This is a hard one for us women to deal with. > I look like I have the disease,  and I have rashes on my face for which > there have been varying diagnosis: rosacea, psoriasis, dermatitis.

Many people with autoimmune diseases do also suffer from the conditions you have stated so that could be a possibility. We with scleroderma also suffer with Teliectasias as well. Those items are discussed at the skin manifestation page I shared the link to above. > Mostly I feel quite ill and it is an effort to do very much these days.

Boy can I relate here. I have a lot of problems with fatigue. Don’t feel much like being very mobile. That is why some days I spend a lot of time on the computer. Don’t feel much like doing anything else. At least that way I feel as though I am functional. Fatigue is a difficult battle to face. Perhaps this link will help you. It is titled Fatigue Management http://www.sclerodermaSupport.com/fatigue.html > I > have two rottweiler dogs and it is becoming increasingly difficult to walk > them due to stumbling and poor vision.

I bet they walk you instead I had a lab once and it sure did walk me and this was before my diagnosis. Now it would probably drag me on my back. haha. > I feel really quite old, though I will be 49 this November.  I would say > that I have had small mouth problems for many years (since teens), though my > skin problems and tiredness have developed over the past six years.

I say that I am 36 feel like 96 and hope I look like I am 26. haha. I also feel I had problems early in my teens. I know I had the raynauds back then. I can’t recall skin problems though. I really didn’t have any skin involvements after my diagnosis either other than finger ulcers until approx 2 years ago. This is rare. Usually you get skin involvement early on. I guess I just like to make it difficult for my doctors. haha. > I hope I haven’t got SD, but it would be a relief to know what is wrong with > me.  

I totally agree. The not knowing is much more difficult to bear. If we know what it is then we can face it and deal with it. It is hard to cope with something unknown. > We find it hard to talk to the doctor about our problems, though when we > have asked directly for tests, he has been very supportive.  I believe it is > common for women to feel this way, and wonder if others have felt inhibited > with the medical profession.  Or is this just another symptom?

There is an article posted on my website that it titled Communicating with your Doctor. Perhaps you may find this article beneficial to read. http://www.sclerodermaSupport.com/communicating-with-doctor.html > Thank you for your quick reply, Sherry.  It’s good to know you are all there > and I am pleased to have found this newsgroup.  

My pleasure sweetie. I am but one of many here willing to be supportive. — Love and Hugs From Sherry Messick Surviving Scleroderma http://www.SclerodermaSupport.com "Get Up, Stand Up and Fight to survive because Scleroderma Kicks you when you are down" "We are all Beacons Of Light for Each Other " Oprah Winfrey Tomorrow is promised to no one. Learn to say ‘I love you’…. Any way you can!          /       ____/_________       //////\    Have a Bewitching Halloween!!      ///  Q   Q         ///     U        //     ___/    

Response:

Maria, I was dx’d by blood tests the first time I went to a rheumatologist but from what I have learned since then was that I was lucky.  However, I had been going to a GP before then and he had no idea.  So it takes the right doctor at the right time.  I know how you feel about needing to know what is wrong.  I had doctors almost convincing me that it was in my head. Then right doctor right time and bingo there is a dx.  I had even gone thru the correct exam before but nothing. Keep your chin up and keep looking.  The answer will come when it is time. Jan

Response:

E. McDermott wrote in message … >number but my brain is not remembering it right now.  I  think it is 1 800 >722 hope  or maybe 1 800 772 hope.  Sorry I can’t recall right now but they

1-800-722-HOPE, and the website is http://www.scleroderma.com/ Your own persistence and research will help a lot towards a diagnosis, and it sounds like you’re doing both.  Let us know how we can help.

Response:

Maria Maynard wrote in message <712qvk$of…@barcode.tesco.net>… >I would like to know about your experiences with diagnosis.  Do you think >there is a possibility that I might have Scleroderma despite negative tests. >How were you diagnosed, and did tests reveal SD immediately.

Scleroderma is often difficult to diagnose.  Not all scleroderma cases come with nice, neat little lab results. I was misdiagnosed by doctor after doctor for at least ten years, possibly more. In my case, my blood pressure, temp and basic blood work were normal, no one ever thought to do a rheumy panel. They just kept trying to give me anti-depressants . . . Calcinosis on my jaw line was misdiagnosed as "cysts,"(by 2 different GP’s), GI problems called "irritable bowel syndrome," skin cracking was due to "sensitive skin," aches and fatigue were from ‘the stresses of being a new mother"!  I left the office time and time again feeling like the world’s worst hypochondriac. We can all relate to how you feel; hopefully it isn’t SD, but if it is, there is usually a degree of relief when at long last you get a conclusive diagnosis, and no one can say it’s all in your head anymore . . . Good luck to you, and keep us posted!!! AC

Response:

> I would like to know about your experiences with diagnosis.  Do you think > there is a possibility that I might have Scleroderma despite negative tests. > How were you diagnosed, and did tests reveal SD immediately.

I am not a doctor so of course I can’t say that you have scleroderma but I do know that many people at first test negative and do eventually obtain the correct diagnosis of Scleroderma. I hope that doesn’t turn out to be the case for you. I do relate to much of what you wrote. You know the not knowing what was wrong with me before my diagnosis was much worse then dealing with reality once I had a name to place on how I felt. What medications are they using for the fungal treatment? I am curious. Please feel free to email me personally or post here often. We are here for you. — Love and Hugs From Sherry Messick Surviving Scleroderma http://www.SclerodermaSupport.com "Get Up, Stand Up and Fight to survive because Scleroderma Kicks you when you are down" "We are all Beacons Of Light for Each Other " Oprah Winfrey Tomorrow is promised to no one. Learn to say ‘I love you’…. Any way you can!          /       ____/_________       //////\    Have a Bewitching Halloween!!      ///  Q   Q         ///     U        //     ___/    

Response:

Sherry- Thank you for posting these links. I’ll make sure Niki gets them.Niki and her mom are trying to get another appointment to see the dermotolgist beacuse they are worried. I’ll let you know what the doc says. You have so much information stuffed on yourlink. Its great! Josie-I don’t have scleroderma but I hope you find out what you do have and feel better. Can anyone tell me how to make the links come into my  puetr faster? They take so long. I have patience. Its worth the wait.  Thanks, Kat

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