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90% sure it is Scleroderma


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#1 Jene29

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Posted 29 June 2009 - 08:13 AM

Hi. I have not been diagnosed with scleroderma at this point, but test results from my esophageal motility test is saying it is.

This all started 3 months ago. I started having upper back pain and was prescribed muscle relaxers. Within 3 days I started having rapid heart rate and shortness of breath. My doctor said it was a side effect to the medication and I was taken off of it. The symptoms did not go away. There were days where I would be dizzy, sweaty, nauseous and had to lay in bed to feel better. This could last all day or it would go away after a few hours, but I would continue to feel odd all day. Long story short, I switched doctors. From there I was told I had anxiety, but he wanted to run more tests first. I ended up in the ER with very rapid heart rate and high blood pressure. While there I had blood work done for my heart, an EKG, a CT Scan & my Thyroid checked. The only thing they found was a dilated esophagus (from CT scan).

I went back to my regular doctor and he had me go for an echocardiogram and I pushed for an Endoscopy (he thought the esophageal issue was not worrisome). The echo came back fine. In the meantime I was put on Pepcid, which pretty much eliminated my rapid heart rate issues. I also had a Barium Swallow done and that showed some dysmotility. The endoscopy did not show any major reflux issues, but the doctor wanted to do a motility test to check for Achalasia.

I got my results back on Friday. The nurse called me to tell me that it looks like scleroderma. I never heard of this before and all she told me is it affects the skin and organs. They got me in with a rheumotologist, but my appointment isn't until August 19th! I am terrified! I came home and did some research, called the doctor back to ask more questions, but of course could not talk to the doctor. I have been researching all weekend. Now that I think about it I started having pain with my knees a few years ago and just about 2 years ago I had pain in my wrists and my hands got weak at times. I chalked it up to carpal tunnel and wear and tear because I work with children who have autism and I am constantly on my hands and knees.

Anyway, I called the doctor back today with one more attempt to talk to him. I could not and his secretary said they are 90% sure it is Scleroderma and the rheumotologist will be the one that has to give the full diagnosis.

Questions. Is it possible that this isn't scleroderma? I haven't had any other symptoms besides the minor joint pain and the esophagus stuff seemed to come out of nowhere, which is why I thought it was a reaction to medication.

If it is Sclero can I be assured it isn't too bad yet since I already had all of those other tests done and no one saw anything out of the ordinary? I am 27 and I am married with a 16 month old. My husband is so calm about all of this and basically says I need to relax until I get a diagnosis. I stress very easily and always just think the worse. I try to remember that we get only what we can handle, but I don't know if I can handle this. I don't consider myself to be a very strong willed person. I think, "Oh it can't be, I feel fine," but then after reading I do have some of the autoimmune symptoms and I am freaking myself out. Is this something that can wait 2 months to be diagnosed?

I live in Pennsylvania so I am going to try to get into John's Hopkins. Does anyone have any good advice or other possibilities? What is strange to me is why wouldn't my endoscopy show the scar tissue on my esophagus? I don't have trouble with swallowing. My lung function is off the charts. I was diagnosed with asthma through all of this, but I don't feel I have asthma. My only issue right now is I get a strange sensation where my esophagus is (asthma like and slightly hard to breathe, no pain). I don't know how else to describe it. I fear I might be joining these boards permanently soon, but it will be nice to have a support system in place to try to deal with the results.

#2 Shelley Ensz

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Posted 29 June 2009 - 08:41 AM

Hi Jene,

Welcome to Sclero Forums! I'd like to give you a great big, relaxing Warm Hug. I've been there, done that, with stressing over a scleroderma diagnosis and I can say that in retrospect, most of my stressing was really worthless and if I could take it all back, and try a new attitude with it, I sure would.

The short answer to some of your questions is, yes, you will definitely live until August to see the rheumatologist, if you consider that it takes an average of six years for women to be diagnosed with scleroderma in the U.S. Particularly, since you don't have any severe or rapidly progressing symptoms. You'll be just fine until then, honest! In many parts of the country, it takes about six months to get in for a first visit with a rheumatologist, so in effect your appointment is quite soon!

So, take a great big deep breath. In 2-3-4-5-6, out-2-3-4-5-6 and repeat about ten times. There, do you feel just a teensy tiny bit better now?

Bear in mind that scleroderma is never diagnosed based on just one symptom, but rather a conglomeration of symptoms and test results. It's possible to have one or two or even three or four abnormal similar-to-scleroderma symptoms but never develop full-blown, diagnosable scleroderma. Even if you do have it, there is an extremely wide range in how it affects people. Most of us live for a great many years, in relative peace and happiness, despite anything illness might throw our way.

Others here will surely pitch in with much more helpful comments and links than mine. I just want to assure you, you are in the right spot. You now have friends and comfort and support. With that, you can deal with ANYTHING at all, even scleroderma, if need be.

The general rule of thumb that I've heard is that we should allow ourselves two weeks to adjust to the general idea of scleroderma or illness. If we are still freaking out after two weeks, which many of us are, we should seek personal counseling to get over the hump as we may have anxiety complicating our illness or be in need of learning some new coping skills. And anxiety can make people feel much worse than just scleroderma! So, give yourself some space and start studying and applying all the stress coping skills you have, or take the time to learn some new ones.

We are all here for you, and that will hopefully be a tremendous relief, just in itself.
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.

#3 nan

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Posted 29 June 2009 - 09:21 AM

Welcome to the forum!
I am sorry you have to be here, but this is a great place for support. I go to Johns Hopkins and love it. Why don't you check and see if there is a scleroderma specialist in Pennsylvania? I thought there was a doctor. Medsger, but I might not be correct.
Take care,
Nan

#4 Shelley Ensz

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Posted 29 June 2009 - 02:23 PM

Hi Jene,

This is our link to Scleroderma Experts and here is the Pennsylvania portion from the Scleroderma Clinical Trials Consortium (SCTC) list:

Institution: Centocor R&D
200 Great Valley Parkway
Malvern PA 19355

Coordinating Investigator: Doyle, Mittie K MD

Phone (610) 240-5675
Fax (610) 240-4132




Institution: Thomas Jefferson University
Division of Rheumatology
233 S 10th St, Room 509 BLSB
Philadelphia PA 19107-5541

Coordinating Investigator: Jimenez, Sergio A, Jr

Other local participants: DelGado, Francesco MD, PhD

Phone (215) 503-5042
Fax (215) 923-4649




Institution: University of Pittsburgh
7 South BST
3500 Terrace Street
Pittsburgh, PA 15261

Coordinating Investigator: Medsger, Thomas A., Jr., MD
Pittsburgh, PA 15261

Telephone Number: (412) 383-8765
Fax Number: (412) 383-8753
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.

#5 Jene29

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Posted 29 June 2009 - 02:28 PM

Thank you for the information! I will hang on to it. We are leaving for the beach in the morning so I hope to relax and enjoy my family :)

#6 Jeannie McClelland

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Posted 29 June 2009 - 02:54 PM

Hi Jene,

I'm with Shelley. Slow down, deep breaths (are you counting?!), try not to panic. OK, stop reading the stuff about scleroderma and read our info on Emotional Adjustment instead. Have you read it? Is it helping? OK, here's another tip I learned just this weekend from a psychologist friend. The brain thinks in a straight line and remembers the last thing it hears. My exercise was "I need to cough NOT!" I told myself that every time I felt a nervous cough coming on (I was officiating at my daughter's wedding; how's that for stress?!) and y'know, it worked. How simple is that? :)

Now onto the subject of diagnosis. I'm not a doctor, I don't even have a doctorate in house cleaning, but it seems to me that esophageal dysmotility is scant evidence for a diagnosis of scleroderma. Did they do any blood work, or anything like that? To get a diagnosis of scleroderma, there is a whole list of criteria to be met. It sounds like you've been looking at that. The good results from the tests you mentioned should be major reassurance too.

Here comes the refrain: Even if it IS scleroderma, every case is unique. I may never progress from where I am now. Even if I do, I may progress so slowly I'll die of old age before it becomes life-threatening. New and better treatments are coming on line all the time.

Nan mentioned doctor. Medsger - he's at the University or Pittsburg. There is also a specialist in Philadelphia at Thomas Jefferson University, a doctor Jiminez. You can get contact details on our Scleroderma Clinical Trials Consortium, which not only lists Pennsylvania, but the other states as well. If the rheumatologist you are to see in August doesn't work out, the SCTC page is a good place to start looking for someone else.

Let us know how you get on, OK? In the meantime, here's another hug and my very best wishes,
Jeannie McClelland
(Retired) ISN Director of Support Services
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#7 eah

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Posted 29 June 2009 - 05:48 PM

Jene,

Please try not to stress. Reading your post reminded me a lot of my first years with this illness. I was around 19 to 20 when symptoms came. Most of my health problems started after I had kids. I didn't get a diagnosis until my thirties. I had a dilated esophagus on x-ray, positive blood work, problems with my wrists (similar to carpal tunnel), I had really horrible fatigue and was diagnosed with asthma I didn't know I had, I had trouble swallowing, acid reflux, mild Raynaud's. I don't have any skin problems as I have sine scleroderma.

Please try to see a specialist in scleroderma. If you are close to the Ohio border, try the Cleveland Clinic. Dr. Chatterjee is a scleroderma specialist there. Ask to be put on a cancellation list for any hospital/doctor you schedule an appointment with. Call the office/scheduler in the morning and ask if they have any cancellations. You might be able to get in sooner than August. However, if you don't, please don't worry. Most of these symptoms can be managed with medications. It is an inconvenience, but I still manage. Most people are okay for many many years. The internet can be a scary place as it usually describes the worst case scenarios. It might be that you don't have scleroderma. Only someone who specializes in scleroderma can tell you for sure. Look for support groups near your home. Talking with someone can help. Please feel free to e-mail me privately, if you need to talk. Take care.

EAH

#8 Amanda Thorpe

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Posted 30 June 2009 - 07:03 AM

Hello Jene29

Welcome to the forum, it's a great place to be as everyone's either where you are or has been.

Do not panic or worry about "what if" because there's nothing you can do about it anyway. You are right that we don't get more than we can cope with and I also believe that all things work for my good, that somehow includes scleroderma. Now if you'd told me before I was ill, that I'd be making that last statement about living with scleroderma, I'd have run around screaming! :lol:

You have no choice but to wait for a diagnosis when you see your rheumatologist and at least you know it will be a correct one whatever it is. Even if it is scleroderma there's still good life to be had with scleroderma it's just that life looks different than you thought it would but that's not necessarily a bad thing.

Keep your questions coming and keep us informed.

Take care.
Amanda Thorpe
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#9 Sweet

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Posted 03 July 2009 - 01:32 PM

Hi Jene,

I want to get in on the warm welcome for you! You've received some great information, so I will just give you a big ole hug and hope that you're enjoying the beach, and not stressing too much.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#10 debonair susie

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Posted 08 July 2009 - 06:57 AM

Hi Jene,

I'm going to get on this wagon to welcome you also.

You've already been given a wealth of great suggestions, at the top of the list: Take some deep breaths and don't stress!

By now, I'm hoping you are becoming more familiar with our wonderful site, where information, as well as great folks with awesome support, are here.

Please know that you are not ever alone in this!
Special Hugs,

Susie Kraft
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