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I'm new to the Forum and frustrated with rheumatologist


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#1 Wendi

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Posted 15 September 2009 - 02:06 PM

Hi Everybody- (I apologize ahead of time for the length)

It's so nice to be here with people who understand my disease and know that I am not crazy! To all of you, my thoughts are now with you. I love the support and encouragement that I have read throughout the forum. The love and knowledge is just wonderful to see being shared openly. Thank you.

I was diagnosed in Nov. 2007 after many mixups and my rheumatologist telling me straight out, "I do not think that you have anything rheumalogically going on." My blood work showed positive anti Scl-70. Ah-ha! So I have Systemic Sclerosis. I chose not to look into what Scleroderma was for a long time. I was treated for my Fibromyalgia that I also have. In the meantime, my first rheumatologist. moved away and I saw one of his colleagues. We did not see things eye-to-eye. He wished that I did not know about the SSc, and did not think that I had it... even though there was a blood test. In Jan. 2009 I had that doctor do another blood test to confirm/deny that I have Scleroderma. I did not go back to that doctor for the follow-up. I decided that I was "over" the rheumatologists. I was in a great remission. After about a 6 month high, I crashed really hard. I needed serious help. I picked up my blood test results from the "know-it-all" and discovered that in the 13 months since the 1st test, the Scl-70 had increased by 40%. WOW! Well no wonder I didn't feel well sometimes.

So I start researching. I have an appointment with the one and only "supposed" (his bio tells all about his myalgia specialization) scleroderma specialist in Oklahoma. It's not until November. So, to get relief, I also got an appointment with another rheumatologist., just a regular one to see about getting some relief. He questioned my CTD from the beginning, because he did not have the test result-initially, he also did not run his own. Two weeks later, he requested blood and urine. Yesterday I saw him, and he did not have the results!!! In addition, his file showed that some other doctor (whom I have never heard of) ordered the tests. My rheumatologist. said that probably what happened is that my results were put in someone else's file. HUH! We are talking about a small facility that is connected to a GIANT facility throughout the city. It's all computer based. Doctor said that he would call me later in the day once he found my test results. I asked if he wanted my original test results, and his face lit up. He said that that would be very helpful. So I went home and returned within minutes with my 2 original test results. Never heard from the doctor or office.

Here is what is bothering me to my core..... I'm miraculously healed! I called the office today and spoke with the nurse, (who never seems to have time for me). She said that they did get their test results and that EVERYTHING is NORMAL! WOW! I stood in shock for I do not know how long.

Phew! I know that blood tests can be wrong. So which ones were wrong. Now suddenly I feel crazy again!

In February 2010 I get to see a REAL Sclero specialist at the University of Texas. I just have to get to through to there. I was attempting to build a relationship with a doctor here.

Any advice?? A BIG BIG thanks for listening/reading. I needed to get it off my chest. Thank you for being here. Bless you all.

Grace and Peace-

#2 Sheryl

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Posted 15 September 2009 - 02:30 PM

Wendi, welcome to our Sclero Forums group. You can ask any questions you feel you would like some input on from others. It can take several years for an accurate diagnosis. Once you have one autoimmune disease others seem to follow. I hope your next appointment goes much better. Most doctors just take care of each ailment as it comes into play. Once things fall into a proper order or tests confirm certain findings then you will get a diagnosis.
Strength and Warmth,
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#3 Shelley Ensz

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Posted 15 September 2009 - 02:38 PM

Hi Wendy,

Welcome to Sclero Forums! I'm sorry it's because of diagnostic challenges, but that's often the case around here.

Blood tests for scleroderma can be a real catch-22, so for that reason they are not used for making a diagnosis, only confirming one which has already been made by clinical observation. So, what you will want for the scleroderma experts is groundwork establishing your symptoms, to see if they all add up to a specific diagnosis, or not. As for the Scl-70, people seem to get a lot of varying results. We've had a fair number of folks around here who are Scl-70 positive but have not yet developed any significant scleroderma symptoms; and others who are positive on one test, negative on another, and so on and so forth.

That makes it all quite a waiting game, doesn't it? We have a whole section on Difficult Diagnosis to try to help us all cope during the phase before scleroderma (or another illness) is firmly ruled in or out. It's really nothing you can hurry along; it is, sadly, an average of over 6 years for women to be diagnosed with scleroderma, and 3 for men with the same symptoms.
Warm Hugs,

Shelley Ensz
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.

#4 imagine2

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Posted 15 September 2009 - 03:06 PM

Hello, I'm also new to the forum. I feel your frustration. I went to my doctor in 2004 with complaints of some joint pain, he sent me to a rheumatologist, who told me I had localized scleroderma. I didn't think much of it because the pain wasn't that bad, but the Raynaud's was terribly painful.

As the years went on the pain and the Raynaud's got worse, but I kept telling myself just to deal with it, stop being a baby about it. My doctor really didn't seemed to concerned so I figured maybe it was all in head. I kept telling him that I was so tired, and I got was " well you aren't anemic".

Again I would just keep pushing myself to go to work, in pain, and so tired I was literally closing my eyes on the highway. In January of this year I got an ulcer on the bottom of my left big toe, the pain was unreal. The doctor told me to take medicine to control the Raynaud's and it would go away. While at work, trying not to put pressure on my big toe, I threw my right knee out. Still I continued to push myself through the day. And I think I was just lying to myself, thinking I'm 42, I'm getting old things are going to hurt. I had a horrible year with many crises in my family, plus my mother died unexpectedly.

I began to not be able to sleep, the pain seemed a lot worse at night, and my left foot, even on very warm days kept going as cold as an ice cube. I went to the doctor and asked for a note for some time off from my job in July. He told me I was depressed and asked me to try an anti-depressant. After taking it I just laid in bed, still unable to sleep. I went off the anti- depressant and went back to the doctor, He told me I needed to do something to help myself, which confused me because that's why I went to him in the first place. I asked him to give me something to keep me awake during the day as well as some energy. He hesitated then gave me a prescription and said it probably wouldn't do any good because the exhaustion was caused by the scleroderma.

I went to the pharmacy and the medicine wasn't approved by my insurance company. So I call the doctors office and leave a message for another type of medicine, he doesn't return my call. I was supposed to return to work on September 10th, but was told I couldn't go back until the doctors at my work cleared me. In the meantime I'm either crying, punching a wall, and frustrated because I can't get more than 5 hrs of sleep at night.

I called the doctors office again to try and get another anti-depressant, and again I haven't gotten a call back. I'm a single parent of two children, my only income is my job, I haven't seen their doctors yet and have run out of time at work, which means no income for now and soon no health insurance. I need my job, but in my heart I know I just can't do it anymore . I have pain in my hands from filing, and typing, pain in my knees from bending, if I sit too long my body stiffens up and if I stand too long my hips start to hurt. I don't know what is the scleroderma or if its all in my head, and I just don't know what to do, really I think I'm going nuts. So I came here for help. I feel so desperate and alone, can anyone please give me some advice. I'm also sorry this was so long and thank you for taking the time to help.

Robin

#5 Jeannie McClelland

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Posted 15 September 2009 - 03:47 PM

Welcome Wendi and Robin - I'm so glad you've both found us and desperately sorry for what you are going through.

It can take a lot of energy to battle your way through the doctor minefield, both to get a diagnosis and to get adequate treatment once you do get that diagnosis. Unfortunately most of us have been through that~ I think all of us would agree that if you can be seen by a scleroderma specialist, things seem to go a bit smoother. It helps to keep a journal of symptoms and also to take someone along to act as your advocate. It's harder for a clinician to be dismissive when there is someone with a patient.

Robin, anti-depressants are often prescribed for pain and for some people they are very helpful. It can be as simple as finding the right one. Once you get one symptom under control, others can fall in line like dominoes. Once we found what worked for my pain, I slept better and even the famous scleroderma fatigue lessened. In the meantime, there is one link to some very helpful tips from the Cleveland Clinic. It was written for cancer patients, but works for us too.

It all gets pretty overwhelming at times. We've got a good coping and emotional adjustment page. There are often resources within a community to help with emotional issues that are low-cost or free of charge and it can be really worthwhile hooking up with one of those. I'm a firm believer in not being more miserable than I have to be :P and take advantage of all the help I can get, as and when I need it.

So once again, welcome, warm hugs, and best wishes,
Jeannie McClelland
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#6 imagine2

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Posted 15 September 2009 - 03:49 PM

Sorry, its me again, I just have another question, when I went to the doctor, he told me I had slightly more scarring in the top portion of my lungs since the last x-ray. I hadn't been told before that I had any scarring, so I asked why, he told me it was no big deal, and that my PFT showed 60%. Does any one know what this is? Thank you so much again, I'm just confused.

Robin

#7 Jeannie McClelland

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Posted 15 September 2009 - 04:08 PM

Robin, Sweetie, I think you need to see a different doctor~ To be told that scarring in the lungs is no big deal really isn't acceptable.

OK, PFT's. There are a lot of elements to a Pulmonary Function Test. There are lung volumes, measures of how fast, how hard (force) and how much air you can breath in and out. There are measures of how well gases are exchanged. Most of those will show as a percentage of the predicted reading based on things like height and weight, etc. It's really hard to know what the 60% indicates. Did your doctor offer any explanation of what that 60% represented?

Who do you see most often? Your general practitioner, rheumatologist, and/or a pulmonologist? If it were me, I think I would definitely want to see a scleroderma specialist for a start and maybe have a consult with pulmonologist who specializes in autoimmune lung diseases. If you'll follow this link, you can look up scleroderma specialists by state. I know it isn't easy getting time off for doctor's appointments and testing, but maybe your employer would allow you to work some flex-time to cover the time off. It's worth asking and also worth asking for the earliest appointment in the day at the doctors.

Warm hugs,
Jeannie McClelland
(Retired) ISN Director of Support Services
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#8 Shelley Ensz

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Posted 15 September 2009 - 04:18 PM

Hi Robin,

Welcome to Sclero Forums. I'm sorry you're in such a very difficult spot right now. I think it would be extremely important for you to go in to see your doctor, rather than wait around for return phone calls that never happen.

If you quit your job now, without a disability leave in place, you could lose any/all rights to disability pay you might be eligible for through your employer. You need to have a firm basis for disability, just having scleroderma isn't enough unless it is well documented by your doctor and that he supports your need for disability.

Please see your doctor. Make sure you talk to the nurse and schedule as long as an office visit as you possibly can; ask exactly what the longest appointment is that you can schedule. In some clinics this is 15 minutes, in others it might be an hour. You may need to make several appointments over several days to get a handle on all your issues.

It's past my bedtime or I'd write more. I'm sure others will chime in with more helpful advice. But meantime, please see about getting a face-to-face appointment with your doctor, right away. Okay?
Warm Hugs,

Shelley Ensz
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.

#9 Sweet

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Posted 15 September 2009 - 04:18 PM

Hi Wendi and Robin,

A big warm welcome to you both. My rheumatologist feels that the symptoms a person is dealing with, is just as important as the lab tests. So putting all of your eggs in one basket so to speak isn't a good idea. Wendi I'm glad you are going to see a specialist in the next few months. Maybe that will help clear things up a little. Then again it may not! This disease is a crazy one, it can go all over the place. So try to stay flexible and go with the flow.

Robin, my heart just jumps out to you honey. You are in a tough place and sound like such a fighter! First off, FIRE the doctor who won't give you the time of day and find someone who will listen to you. That will be the beginning of you getting a little support. We're here for you too Love.

Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#10 Wendi

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Posted 15 September 2009 - 04:33 PM

I just wanted to say that it feels so good already to be in a community of people who know what I am going through. I am very grateful.

Robin, like you, I wanted to ignore my symptoms for as long as possible. I want to be "normal" and just keep going. What I know now is that I only have this one life, and I am going to fight for it. I'm finished messing around with doctors who are not schooled or learned in our disease. It's simply a waste of everyone's time.

While you still have insurance, find a sclero specialist. If there is not one in your state, as there is not in mine, find out how your insurance handles out of state specialist visits. I KNOW in my heart that once I get to see the Sclero specialist in 2010, I will feel a lot better.

Grace and Peace-

#11 imagine2

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Posted 16 September 2009 - 12:16 AM

WOW, you guys are wonderful. I can't even tell you how nice it is to talk with people who actually understand. Thank you so much. Part of the confusion for me also comes from the diagnosis of the localized sclero. I unfortunatly smoke as well, so I asked the doctor about that being the cause of my lung problems, he told me it didn't help but the sclero was also a part of it. Any thing ive read on localized says it is only a skin problem. I did see a top notch rhuematoligist, for a second opinion, He told me the same, it was localized, it would not cause me any problems, and pretty much have a nice life. It was actually a dermatoligist who asked me about crest, and I had no idea what he was talking about. {went to see him for all the lovely red spots taking over my face}. It was my family doctor whom Ive had for 16 years, who won't return my calls. I have gone into his office twice last month, so Im begining to think maybe he is just tired of me. I then went to see my rhuemotoligist and he wouldnt even discuss the issues with me, stating that was between me and my family doctor, and would not offer an alternative medication. Maybe its because my pain isnt severe, what they dont understand is it is constant and its starting to wear me down. I also no ive been depressed, I can usually snap myself out of it, and move on, but this time around thats not working, I work for the state of NY and they dont offer disability insurance, so I know I have to go back to work. I love the job I have and letting it go would be a big mistake, I just can't get myself to go back. It actually hurts just to drive my car. By the time I get home from work im so exhausted I can't even take care of my kids. I can't enjoy them, and that to me is unexceptable. So do vitamins help? Thanks again to everyone. I didn't no what to expect when I signed up for this site, But I already feel so much better. I just can't thank you enough.

#12 Oremus

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Posted 16 September 2009 - 05:22 AM

Hello everyone,

I'm somewhat in the same boat as Wendi. And here is my story.

I was diagnosed with Scleroderma back in June 09 by my general doctor, who then sent me to a rheumatologist who said he didn't think I had scleroderma, but instead he thought I had sleep apnea (due to my other symptoms).
Which in a way lifted a lot of weight off my shoulders as this would be an "easy fix" problem compared to Scleroderma.

So I went for a sleep study and that came back negative. Also because the rheumatologist didn't think I had sclero, he did another blood test, just to make sure it was in fact my blood and that it hadn't got mixed up. (To be honest I thought the very same thing, but it could just have been denial kicking in.)

That blood test still came back with sclero. So the doctor reiterated that he still didn't think I had it, so he gave me Cymbalta! He asked if I felt depressed and if I think I needed something. I was floored, I know there are times I may get bouts of depression, but I don't think I'm in need of medicine to make me function So now I'm left with this diagnosis, an unfilled prescription for Cymbalta (which I will never fill) and so many questions unanswered.

I'm 31 a wife of 13 years and mother to 2. I just started my very first time of college and I have this mis/diagnosis over my head. I had found this board back in June when I went into research overload and almost posted then. But when the 2nd doctor told me he thought it was apnea, I figured I would lay off this board as to not burden anyone.

Now I'm at a loss, I don't know what exactly my next step should be. I know I need a second opinion. Maybe I should go out of my state for one? Any info would really be greatly appreciated. I just need to figure out what it going on. If it is sclero, then I want to fight, starting now.

Thanks for listening, (reading)

Tara

#13 Oremus

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Posted 16 September 2009 - 04:24 PM

I haven't had any other test than just the blood test.

This all started because I was having horrendous headaches upon waking up in the morning. My mother has high blood pressure and because of that, my mom, sister and sister in law (who was a nurse) urged me to go. They seemed so concerned that it actually scared me into making the appointment with my general doctor.

When I was at the initial visit I let her know of my symptoms, bad headaches, fatigue, aches and pains and difficulty breathing, problems sleeping, etc. Right then I had a breathing test, which came back normal. I had a CAT scan that came back normal and I had a chest X ray that came back normal. So I was sent for blood work.

A week or 2 later the nurse called me saying that scleroderma showed up. She told me that when something in the blood is found they keep testing further and further until it pops up negative. The reaction of the nurse when she told me I had it was so startling I started on my research warpath. Which was the absolute wrong thing for me to do to myself. I was scheduled for the rheumatologist a week or two later from when I got the phone call. The rheumatologist did a basic exam, looked at and felt my arms, asked me questions and told he he didn't think it was sclero, that it might be sleep apnea. I had that test done and that came back negative. plus the second blood test done that he ordered still came back with it. I don't know anything else other than they say I have it. I don't know anything about "SCL-70 or anticentromere". I've never even heard of it. I am in the very very first stages of figuring what it going on.

I guess I should ask for all my results, MRI, Xray, Breathing test, Sleep apnea, and take it all to a completely different doctor and see what else there is.

On the flip side of this, when the rheumatologist told me that he didn't think I had it, I actually felt so angry that someone would just throw it out that I do have it. Why torture me? My poor kids would see me with tears streaming down my face, while I tried to hide my uncertainty. But then when he said my blood test still came back positive, it threw me off again. And now I'm upset that he says I have it, but yet I don't, yet gives me depression meds and a follow-up appointment in two months. And no other discussion about any other test to see what is going on. I just don't know. I now feel like an idiot that after all the research I did do, I still am just as clueless as when I first started. And people wonder why I never go to the doctor.

Tara

#14 Jeannie McClelland

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Posted 17 September 2009 - 03:06 PM

And here's a link to the Scleroderma Clinical Trial Consortium.

I also was told by a rheumatologist that there was nothing wrong with me~ Given the rarity of scleroderma in general, never mind even rarer variants as the "sine" form, I guess it shouldn't be too surprising that many doctors get the diagnosis wrong or fail to make a diagnosis.

Thanks to the disease getting more attention via such avenues as the EULAR conference and our own humble efforts (you are all out there teaching and talking, aren't you?!), I think perhaps over time most of us won't have to wait so long nor struggle so hard to get a diagnosis. Unfortunately, thanks to increasing awareness (but maybe not adequate understanding)of the disease, I'm afraid there will be a period where we'll see a lot of "false positive" diagnoses and needless fear and anxiety.

I guess this brings me back to the subject of scleroderma specialists - if you possibly can see one, even it it is only as a consult or if there is any doubt of the diagnosis, in my opinion it is time and money well spent.

Best wishes to everyone,
Jeannie McClelland
(Retired) ISN Director of Support Services
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#15 Oremus

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Posted 18 September 2009 - 12:28 PM

Thanks so much for the info,I went to Scleroderma Clinical Trial Consortium website and the closest places would be either Cali or Arizona. I'm from S. Cali so I just might head back "home" to talk to someone.

I just got a copy of my Lab results (from the 2nd blood test) and it shows:

Antinuclear Antibody - Positive A
Sclero-70 - 2.2 Pos A
C3 Complement - 146
C4 Complement - 22
Rheumatoid Facto, Quant - 6
DNA, Double Strand -2
There is other stuff but it shows negative.

Since I tested positive for Sclero - 70 and the Dr's just wanna wait and see what happens, I am going to call over to Cali and see what they say.

I thank you again, for all your info..
And I'm sorry to Wendi for hijacking your thread =)
Good Luck to you all!

#16 Oremus

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Posted 18 September 2009 - 12:35 PM

I forgot to add,

I do have problems what feels like heart burn, and some foods getting stuck( I honesty don't think it's related tho) I have swelling in my hands and feet ( but I don't think the feet swelling are related either), my legs tend to get VERY itchy, I'm chronically fatigued, constipation, shortness of breath and headaches. other thand the swelling of hands, there really is no outer signs of anything being wrong.

#17 roseback

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Posted 20 September 2009 - 04:12 AM

How grateful I am to have found this website. I have had systemic scleroderma for almost 3 years. This disease can make you feel so alone sometimes. I guess it's all the time I spend on the couch because of my fatigue I ponder it too much.