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New here, wondering if this is a familiar story... and a few questions.


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#1 cantuse

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Posted 08 June 2012 - 08:33 AM

I arrived here after some blood work requested by a neurologist came back positive for ANA and SCL-70. I was seeing him about some deep-seated thigh pain I've had for nearly six months. He's already commented on the blood work that I will need to see a rheumatologist.

I'm curious if its relatively normal to feel as though you've spent years feeling like a hypochondriac making mountains out of molehills because you feel like these seemingly disparate symptoms are interrelated, and yet none of the doctors or specialists are ever able to make definitive diagnosis. Eventually you start to shelf your concerns, thinking to yourself that they either are indeed psychosomatic or that they need to become dramatically worse before you can do anything about them.

I know it's generally premature to leap from mere antibody results to thinking I might have scleroderma (indeed I read the Cyberchondria article in new user sub-forum before deciding to post), however there are vast litany of medical issues I've been experiencing for over a decade that weren't related to the leg pain and that I didn't share with the neurologist; things that in hindsight seem like they explicitly match up with what I've read about SD in the last few days.

I just wanted to know if this sort of feeling of helplessness is common? Also, as perverse as it might sound, have others have found it a relief to have a diagnosis? To me it would be a relief to have a name for the condition and a community, and stop feeling like I'm dealing with this all by myself. I actually dread seeing the rheumatologist and having him flatly rebuke taking my story, symptoms or results seriously; because I would be back to feeling alone against all these symptoms.

Is it important to have the first rheumatologist you see be familiar with scleroderma? I've read several stories of doctors refusing to consider it scleroderma, instead calling it fibromyalgia. This seems inconsistent with my reading that SCL-70 is generally associated only with diffuse and limited scleroderma and not other conditions. Is that true?

How do you get them to stop shaving with occam's razor (i.e., really consider scleroderma or whatever is actually right, instead of only treating the low-hanging fruit)?

Lastly, anyone know of any good rheumatologists in the Seattle area? There are a great many rheumatologists around here, but nary a one that I can find who has a listed, clinical interest in scleroderma. I'd rather find someone with a background in it, as I'm tired of finding specialists, who like hammers treat every problem as a nail.

Thanks for reading,
~Shawn

#2 Joelf

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Posted 08 June 2012 - 02:34 PM

Hi Cantuse,

Welcome to these forums!

We spoke today in the Chat Room and I'm very pleased you've found our forums and joined our community. Many of our members do share your feeling of helplessness and personally I was very relieved when I was diagnosed as I had been imagining all manner of dire problems (I actually started babbling incoherently about immune problems in cocker spaniels when my consultant told me Scleroderma was an autoimmune disease! :rolleyes: :lol: )

We do recommend that you consult a Scleroderma specialist and I've included links to our pages Finding a Scleroderma Expert and the ISN Guide to Scleroderma Experts. Scleroderma is a notoriously difficult disease to diagnose and so it really is beneficial to consult someone with the specialised knowledge to deal with it as the blood tests are only the baseline and should be taken into account with other symptoms as well.

I do hope that you'll continue posting and joining us again for interesting discussions in the Chat Room.

Kind regards,

Jo Frowde
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#3 judyt

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Posted 08 June 2012 - 03:19 PM

Hi Shawn,

Your story is just like mine, many years of vague symptoms which were treated as unrelated by all the practitioners I visited over the years between 1966 when I was 22 and 2002 when it was suggested that I might have CREST. What a relief to get a diagnosis, or at least a suggestion of one, and to know that it was NOT all in my head. By 2002 the damage to my organs was done and it was too late to visit a Scleroderma Expert even if there had been one closer than Australia. Now I can just continue dealing with the aftermath.

You obviously have been taking this thing seriously now that you have a suggestion about what it is and no doubt you will follow up on the list of Experts Joelf has given you.

Welcome, I hope we hear more from you about your journey from here on in.

Best wishes
JudyT

#4 Snowbird

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Posted 08 June 2012 - 04:04 PM

Hi Shawn

Welcome, you'll find a wealth of factual information here from people in the know. It's a great place to ask any questions. I have learned so much being here and continue to learn more all the time.

Because your bloodwork tested positive for ANA/SCL 70, I would recommend that you definitely see a scleroderma rheumatologist/expert too. Not all rheumatologists are familiar with this disease.

Fibromyalgia and Scleroderma are 2 different illnesses. I have fibromyalgia and many years later, when my bloodwork tested positive for ANA (CREST), I saw a scleroderma expert. Best thing I did for myself was to see her and I think you will find the same. I am monitored regularly by her now. As Jo mentioned, bloodwork alone is not enough for a diagnosis. Other symptoms also need to be present. My understanding is that there are usually 2 or more other symptoms as well before they diagnose it as scleroderma. But then again, in other instances, some people never show positive bloodwork but have symptoms, hence they get a diagnosis. Sounds like you have already figured out that these autoimmune diseases are quite a challenge to pin down.

I also hope you keep in touch and let us know how you are getting along.
Sending good wishes your way!

#5 cantuse

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Posted 09 June 2012 - 03:09 PM

Thanks for the responses. I am currently scheduled to see a rheumatologist in early August.

I'm very happy to find such a warm community, and it was nice to chat with you Jo. I'm sure I will be around, and will definitely update as my situation develops.

#6 KayTee

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Posted 12 June 2012 - 12:15 PM

Hi Shawn:
My experience was that there was some relief with a CREST diagnosis and a sense of now what is ahead of me. But I have found good doctors (not always the first time) and feel like I'm on a positive plan to manage my symptoms. I agree with the low-hanging fruit theory and sometimes had doctors who were very quick to usher me out of the door.
Good luck.
Kay Tee

#7 Amanda Thorpe

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Posted 14 June 2012 - 04:15 PM

Hello Shawn

You may be interested to see our videos about difficult diagnosis of scleroderma which states "Many doctors shy away from diagnosing scleroderma...a diagnosis will make the patient uninsurable, and possibly depressed...it would be an adverse diagnosis, with no benefit to the patient". Scary eh and how condescending to the patient?! Also have a look at diagnosis of scleroderma and finally symptoms of scleroderma. It's a wonder anyone gets diagnosed ever!

Oh yes, the worst ever diagnosis is no diagnosis. At 39yrs old I was diagnosed with diffuse cutaneous systemic sclerosis, told I would never work again, my symptoms would deteriorate, there was no cure and that was that. I thought then and still think now it would have been worse to hear no diagnosis because that can't be treated, explained or adjusted to.

Whilst still at work and clearly struggling physically a dear friend told me to go off sick as in I shouldn't clearly be at work, I explained that all I had was a collection of symptoms, a nameless cause and no way could I go off sick with...what exactly??

It seems to be a common response to play down our symptoms and how ill we feel prior to diagnosis and goodness only knows why!

Welcome to these forums, I hope you find them helpful and post more so we can get to know you.

Take care.
Amanda Thorpe
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#8 Shelley Ensz

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Posted 15 June 2012 - 01:04 PM

Hi Shawn,

Welcome to Sclero Forums, but I'm sorry it's because you have questions about illness. As I understand it, certain clinical symptoms are required in order to diagnose scleroderma. Symptoms such as tight skin and pulmonary fibrosis are most helpful with diagnosis and lacking specific symptoms or a certain cluster of symptoms or findings, it simply cannot be diagnosed, even with a positive SCL-70. That's because SCL-70 can also be caused by other things, such as systemic lupus (SLE) or lab error, and because some people with antibodies never go on to develop a full-blown, diagnosable illness.

Therefore, it can require a very long time of observation before a specific illness can be identified or firmly diagnosed. It is an average of six years from onset to diagnosis for women (and about 3 years for men). The best thing you can do right now is learn about autoimmune diseases, and how pesky they can be to diagnose, and maintain a strong support system. Most of us would say that the journey to diagnosis was the most difficult part of all, while a good 50% of people with symptoms of a connective tissue disease never go on to develop a full-blown disease, even though they may always feel that they are just waiting for the next shoe to drop.

Unfortunately, there is no crystal ball to tell which of us will endure progression, and which of us will continue to endure the watchful waiting, neither of which is a good option. So it becomes very important to make our peace, emotionally, with the whole process. Such as, it's good to be diagnosed, but it's also good not to be so sick that the diagnosis is immediately obvious; it's good that the doctor found out what is wrong; it's also great if nothing was obvious enough to be confirmed.

Readjusting so we can look at it from an "it's all good" viewpoint helps to sustain our self-esteem, because otherwise we can think that we or our doctors are a "failure" if there is no immediate diagnosis, and that sort of thinking can readily lead to unhappiness. Whereas, both we and our doctors can do everything right and yet still we may remain in diagnostic limbo for a very long time.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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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 cantuse

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Posted 18 June 2012 - 11:22 AM

Wow! Thanks for the response everyone. My followup with my neurologist is this afternoon, and unfortunately I can't see the rheumatologist until August!

Thank you for the kind words Shelley. I definitely don't want to become too hopeful about a diagnosis for the reasons you described; it's just that the results of the blood work resurrected the possibility of addressing a variety of symptoms that I've been dealing with fruitlessly for so long.

I've been dealing with palmar eczema for fourteen years, legendary acid reflux and esophageal spasms for a decade alongside numerous other GI 'nuances', numbness/tingling/itching in both anterior thighs for at least five years, and now a sharp pain in my rotator cuff and a deep ache in my thigh. Heh, oh wait, I forgot to add the transient trigeminal neuralgia that attacks a different side of my jaw twice a week. This is on top of the fact that I've worn bifocals for double vision since I was 29 and that my fingers and toes are freezing at all times unless its 85deg Fahrenheit. My acid reflux is to the point that when I'm unmedicated, I have acid reflux virtually every second that I'm awake and the smallest movement or

I had virtually given up on treating the vast majority of symptoms above because I was tired of getting back results indicating that everything is normal. I've had three MRIs this year alone for the paraesthesias, thigh pain and shoulder pain, all of which came back normal. I had a gastroentroscopy six years ago that find irritation and little else. There's never been a cure for the eczema aside from Lidex and petroleum jelly and cotton gloves at night; which as you might guess causes problems with a person's social agenda. :D Noticing that my 60-year-old coworker could navigate the stairwell at work and manage a conversation simultaneously while I furtively gasped whenever I could because talking and stairs suddenly seem mutually exclusive. The leg pain got to the point I tripped over my foot and broke a metatarsal, in my own house no less. I figured I was stuck and none of these issues could really be resolved, let alone explained.

And now,along comes my blood work. In addition to perhaps explaining the leg pain that I was seeking treatment for, it also bears a revelation, a possible indication of something that could explain these other issues that have insidiously demolished my quality of life these last ten years.

It's hard to explain just how palpably excited I am at the notion of a diagnosis and thereafter support groups such as this one, and not having to feel alone or ever again conceal my concerns for fear of seeming a hypochondriac.

#10 Amanda Thorpe

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Posted 20 June 2012 - 03:12 PM

Hello Cantuse

How did you get on with the neurologist? Any further forward on the diagnostic road?

Take care.
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#11 cantuse

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Posted 20 June 2012 - 11:40 PM

Amanda,

Thanks for asking. I got along with neurologist fairly well. My spinal MRI came back normal, which is essentially what I expected. Since I had already had a separate MRI of the affected leg just a few months ago, the neurologist had all the data he needed to conclusively state that there was nothing neurological that could explain the long-term leg pain I'm experiencing, nor the five years or so of meralgia paresthetica in the same leg.

Since the only notable abnormality was the ANA and SCL-70 tests, he concluded that an 'underlying inflammatory condition... like a cousin of arthritis' could be causing or exacerbating my condition. After disclosing to him all of my other symptoms that are most likely autoimmune in nature, he referred me to a rheumatologist. I actually have two rheumatologist appointments booked, one with the rheumatologist recommended by the neurologist and another that I picked myself. I had scheduled the appointment with the independent rheumatologist after I received the lab results but before the follow-up with the neurologist. Since I pay through the nose for a good PPO-based insurance plan and can see specialists on a whim, I'm tempted to keep both appointments just so I can make sure I establish specialist care with a doctor I can communicate openly with.

The disappointing part is that in Seattle, rheumatologists are apparently as busy as plastic surgeons in Beverly Hills, I can't get seen until the first week of August.

I'm trying to be patient, but as you can see from my previous posts I'm rather excited by the prospect of identifying the underlying cause of some chronic problems I've had. I'm also concerned that I may have had scleroderma for some time and that it has been dormant/recessive for years but is now active again. I'm starting to notice the leg pain seems to intermittently manifest in my left thigh now, my shoulder pain similarly has started occasionally appearing on my left shoulder, and I've started noticing the ever-so-slight tingling and burning sensation running down the back of my forearm to the back of my hand. Based on how wildly divergent progression in scleroderma can be, it's hard not to be concerned.

Worse yet, my wife is 38 1/2 weeks pregnant and the last thing I want her to do is going online and read about scleroderma. I've obviously shared some things with her out of anxiety, but I really don't want to distract her right now. It's nice to be able to talk about it here.

Shawn

#12 Amanda Thorpe

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Posted 22 June 2012 - 04:30 AM

Hello Shawn

Keep both rheumatology appointments, why shouldn't you? It is difficult to have symtpoms and no name to hang them on, no diagnosis is the worse...
I hope you get some conclusive news soon and congratulations to you and your wife on your upcoming baby! :balloons: :balloons:

Take care.
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#13 scampie5

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Posted 28 June 2012 - 04:58 PM

Hi

For years my family called me a hypchondriac, I seemed to always have some thing wrong with me, lol. Always at the doctors but looking back after being diagnosed with sclero I have found that many of us have had this problem.

At the time it was so annoying as my family often put me down over this and I used to get so upset about it as it was so real to me. Today my family's children have allergies etc. and often phone me about this and I am so glad that I can help them.

I think at last they understand me, my past and my problems.

Lynn