Positive SCL-70 and symptoms, but doctors are brushing me off...
Posted 19 October 2009 - 07:48 AM
My doctor sent me for a routine blood work panel...and a couple of days later she called me back to let me know that I had a slightly high ANA (I think it was 320ish, but I don't remember exactly. Then she sent me for a rheumatoid panel, which was all fine except for the SCL-70, which was elevated (again, not crazy high, I think it was 40 on a "0-25 is normal" scale, it was at clinical lab partners).
I was then sent to a rheumatologist, who told me during my visit that he did not have any experience with sclero at all, and that from what he saw, we were looking at "Systemic Sclerosis."
You can imagine my state of mind at this point, and I decided to search online for a doctor who specializes in sclero so that I could get 1. an accurate diagnosis, and 2. some more information on what the next step needs to be from someone who is used seeing this type of thing and dealing with it.
So, I found the tri-state specialist. I called and got an appointment for 2 weeks from the call, which I was extremely thankful for (given how long it usually takes to get an appointment).
I went to the appointment and was initially seen (for the majority of my visit) by another doctor who works with the specialist. He basically asked me everything that the first rheumatologist asked, but was extremely rude and mean with me. Its my fault really, I was upset and went in to the appointment alone. I should have had my dad come in with me.
So, at the end of this long visit, he goes and gets the specialist, who I thought was going to be there the whole time. He brings her in and she tells me that while I have a high SCL-70, that there is no sign of sclero on my body and that I'm ok right now.
Basically, I walked out of the visit not knowing what in the world was going on. I was so upset by the first doctor that I didn't get to ask anything that I wanted to and didn't understand a thing that was going on.
In the 6 weeks since that visit things have been getting worse for me. I am stiff/sore almost all the time and my skin goes through periods where it feels so tight, like its trying to strangle me.
I called the rheumatologist back and ended up getting a call back from the rude doctor. He basically told me that he doesn't feel like they need to see me and that my complaints were not related to sclero. He told me that if/when scero stuff happens, it will be so obvious it will basically be a medical emergency. I asked him if it were possible that I had internal involvement with no skin involvement, and asked if it was possible that my skin involvement was something that only I might notice, but not necessarily be something that he might pick up on as "odd." He basically told me that I'm nuts, and that he would have the secretary schedule an appointment for february, and that he was only seeing me because I wanted him to...not because he wants me to come.
I just don't know what to do. This rheumatologist didn't listen to a thing I said, and I'm feeling like garbage...and feeling like I'm being overlooked.
Should I go back to the first rheumatologist? He wasn't experienced in sclero, but he was willing to listen to me and seemed to think I have it.
I just don't want to sit around while I get worse...doing nothing. I know it is important to catch this disease in the early phases so that you can prevent any damage to the body that may be irreversible.
I would appreciate any advice on the topic, or any information if anyone has gone through something similar.
Posted 19 October 2009 - 08:41 AM
I'm so glad that you have found us and have taken the time to write all that you have been through. Even though we are not doctors, we can provide you with the support you obviously need right now and maybe some good advice. Many of us have experienced exactly what you are going through, so please know that you are not alone. No matter whether or not, you have scleroderma, what you are going through is just not right. It's natural for you to want answers and to want to be treated like a human being rather than a number. I'm so sorry for the lousy experience you had with the "specialist". It's always frustrating to schedule to see one person, then get another.
To be perfectly honest, if it were me, I would look for another specialist or at least, another rheumatologist. It's obvious that the last doctor you saw is biased and could probably have a hard time admitting he or she was wrong. But one never knows. By February you might have some externally obvious signs that point to a specific disease. It is sad that with all the excellent research on the Internet that a specialist's co-worker would require signs on the body in order to diagnose scleroderma. There are several people in this forum that have scleroderma sine scleroderma (scleroderma without skin involvement). I'm actually one of them. I'm sure there are lots of doctors would look at me and say - no way do you have scleroderma! Of course then they were look at all the systemic activity and possibly change they minds.
Instead of waiting until February (by then you would probably be a basket case and I couldn't blame you), I would find another doctor. Please check out are section on scleroderma specialist and rheumatologists. See if you could find another in your area. And Please - this time - take someone with you (which you already know) AND take a written list of symptoms, descriptions of symptoms, when they started and how they have progress. Also write down your questions. Make a copy and when you get to your appointment, hand the copy to the doctor. Call it an agenda and that the meeting isn't over until all of the items on the agenda are discussed. I still do it every time I go to a doctor's appointment. It works great! My rheumatologist just picks it up off the table when he walks in the room and we get down to business.
I am no doctor nor do I have any medical training; therefore, I wouldn't even attempt to say if you have or don't have scleroderma. However, you obviously have some things going on that aren't right and are affecting your health. You deserve answers, so please don't stop until you get some. Please keep us posted!
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)
Posted 19 October 2009 - 09:59 AM
I am so sorry you've had such a disappointing experience, unfortunately it can be quite common in the search for a scleroderma diagnosis. Because everyone presents so differently and progresses uniquely it can take a long time to get a diagnosis, having said that your problem thus far has been the doctor patient relationship.
Janey has already explained that you don't necessarily present with skin involvement first or even at all! A diagnosis of scleroderma is best reached upon consideration of the combination of symptoms and blood work because there is no one test to rule scleroderma in or out. When I was diagnosed my blood work said there was nothing wrong with me but my symptoms and extensive skin involvement said otherwise. Two years on and my rheumatoid factor is still in the normal range despite the fact that I have diffuse systemic sclerosis a rheumatic disease!
I think your best bet is to find another rheumatologist for which Janey has given you the link in her reply. When you see the new rheumatologist consider taking someone else with you, write your questions down and make sure you don't leave until they are answered to your satisfaction. There is nothing wrong in actively partnering with your doctor(s) to ensure you get the treatment you want both medical and personal. We are our own best advocates.
Keep posting and take care.
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)
Posted 19 October 2009 - 10:46 AM
We DO "feel your pain", in that we totally understand how you must have felt during the last doctor "visit".
As Janey mentioned in her post, it's something most of us have gone through, which is of no consolation, when our expectations are so much more than what we "get served" at said appointments.
As both Amanda and Janey suggested...finding a rheumatologist who is "more knowledgeable", will not be condescending to you. In fact, the rheumys I've ever been to, have wonderful chairside manners, which is why they are so great in their field of expertise.
I wish you the best, in finding a rheumatologist that is patient and willing to follow through, until some answers are found and you are being treated correctly, for what is going on.
Please keep us posted!
Posted 19 October 2009 - 12:27 PM
I think that you will find many on this site have had similar experiences in getting diagnosed.
At age 18, my own son was diagnosed with esophageal dysmotility by his GI doctor. He ran the blood work for Scleroderma and his ANA & Anti-RNA Polymerase 1/111 were positive and his SED rate sky high. That doctor suspected sine Scleroderma. He also had restrictive lung issues, major fatigue, rib carriage pain (costro....sp?), loss of his vocal cords, autoimmune depression and esophageal spasms. The local rheumatologist agreed and sent him on to a specialist....he said 'no' to scleroderma because there was no skin issues, Raynaud's, and the fact that he was 18 years old and male. His local group of rheumatologists decided on UCTD and started him on Plaquenil.....9 long months after the initial diagnosis of esophageal dismotility. It took a couple of months but his body reacted favorably to the Plaquenil and most of his symptoms have subsided. He still is tired all the time and has some esophageal motility problems, but nothing like when first diagnosed. He's being treated by the rheumatologist that listened to his symptoms. It's hard to believe but that whole adventure started 3 years ago this month!!!
Take care, Everyone.
Posted 19 October 2009 - 04:01 PM
Finding the right doctor has been an ordeal for me. I'm tenacious, so I"ll get where I need to be and where I'll be respected and listened to, but the path from start to there has been frustrating. But I'm worth it. You're worth it. Don't get discouraged, don't give up, don't 'settle for' mediocre or disrespectful care.
Whew! Deep breaths. For me as the subject is still a sore one. And for you cause we have to be in this for the long haul, with a sense of humor, and hope for better care.
Take care of yourself.
Posted 19 October 2009 - 04:51 PM
Goodness I am so sorry for what you are going through. This disease is enough to deal with without getting support from your providers.
I hope that you can find a specialist in the link that Janey gave you. Please don't get discouraged, take one day at a time and bounce any ideas off of us if you'd like.
Hang in there.
Posted 22 October 2009 - 06:50 AM
I am so sorry you are dealing with this. As I was reading your post my stomach turned into one BIG KNOT. Unfortunately your experience is not uncommon. I had symptoms for nearly 20 years. I am a male, now 47. In 06 I was so sick I ended up in the emergency room and was fortunate enough to have a doctor who actually listened to me. He did appropriate lab work and I was diagnosed with scleroderma. It felt like a dream after all these years that I actually had a diagnosis.
I still wrestle with anger issues. Sooooo many doctors had dismissed me over the years. These dismissals ranged from polite, "sorry, can't help you" to accusing me of being a whiner to actually telling me I should see a shrink. The worst one implied that I was scheming to go on public assistance.
Unfortunately, I know this is not uncommon. PLEASE don't let a doctors ignorance sway you from pursuing medical care. I have to admitt that I gave up on getting help and lived my life in misery until my emergency room visit. I went 7 or 8 years without seeing a doctor. Please don't give up on yourself. Trust yourself. Keep trying different doctor's till you find one who will listen.
In the meantime be kind to yourself and don't be afraid to reach out to loved ones for any helf you might neeed. Good luck and keep us posted. Joe
Posted 22 October 2009 - 07:33 AM
Jblake, keep looking. Write a letter to your insurance company and the doctor's office. Make it known that the doctor was horrible!
Good luck and keep fighting!
Posted 29 October 2009 - 09:23 AM
Yes, if I were you, I'd go back to the first rheumatologist. You obviously had a rapport with them and were treated decently. I'd write the second one off the books; no amount of convincing is likely to change their mind if it is so thoroughly made up. Your first rheumatologist can monitor and treat your symptoms and if things progress to the point they feel a diagnosis might be possible, they can refer you to a different scleroderma 'expert'.
I don't know about anyone else around here, but the diagnosis part for me dragged on for years, and I have to admit that for awhile, I became more interested in preserving my sense of dignity than in getting answers. It is hard to keep dusting yourself off and getting back in the fray, but there's really no choice if the symptoms keep progressing. I was lucky enough to find a fabulous internist who thoroughly believed me and worked hard to get my symptoms properly investigated and documented. He even decorated my whole chart with his sketches of my skin involvement, and worked with me for a full year to get copies of all my medical records (going back decades) and organize them sensibly with a master listing referenced to notebooks with the documentation for each symptom/illness. That all helped incredibly, later on, and saves me hours of explanations whenever I have to see a new specialist or clinic.
So, stick with the doctors who are truly supportive. Work with them in getting your symptoms properly treated and documented. Make sure you are at least getting a good annual physical, too, to monitor for any possible organ involvement. But you might be at an early stage where a diagnosis just can't be made yet; or it may never progress to full-blown scleroderma. Only time will tell...and in the meantime, make it a policy to never return to any doctor who does not treat you with respect.
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099
The most important thing in the world to know about scleroderma is sclero.org.
Posted 29 October 2009 - 12:36 PM
I wouldn't hesitate to go back to the first doctor again and start over either. Sounds like he took your symptoms seriously. Perhaps if you explain to him that you had a bad experience with the one you just saw, then he would refer you to another specialist and try to help you (ask him straight out if he knows someone really good he thinks could help you, they definitely have connections)? Wouldn't hurt to go prepared with the name and contact information of a specialist that you would like to see either (the ISN Team here always have lists for areas). Remember that you have nothing to lose by asking and everything to gain. Let us know what you decide.