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So confused, don't know what to do


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#1 Teatime

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Posted 05 April 2012 - 12:22 AM

Hi all,
I'm really struggling and could use some advice and direction. Mine is a long story so I apologise ahead of time!

I was first suspected of having autoimmune disease by my primary doctor 8 years ago. He sent me to a rheumatologist who was very thorough. At first he thought I had RA but I also had symptoms of irritable bowel disease and MRIs of my spine, etc. showed sacro-iliitis and spondylitis, too. I was treated with methotrexate and Remicade which improved some things but stirred up organ involvement, particularly kidneys. The MTX made me very ill (vomiting) and had to be discontinued. I was then treated with Cellcept and plaquenil.

Labwise, my ANA is sometimes positive. I've also had some of the Lupus tests come back positive repeatedly. And the last tests my good rheumatologist did included SCL-70 which came back positive. He was concerned about that so he repeated the test and it came back positive again, with almost exactly the same number. But before we could investigate that further, I moved out of the area.

Since then, I have not had good rheumatological care. The rheumatologist in my new city just continued my meds and didn't try anything else or follow up on the sclero. possibility, even though my condition wasn't stable. I do have a fantastic internal medicine doctor who is extremely worried about me and has been trying to find a good rheumatologist for me. Unfortunately, she thinks I really need to be seen by top-notch rheumatologists in Dallas but my insurance won't permit me to go to doctors in Dallas.

So, I'm being treated by a bunch of specialists focusing on their own area. I have severe GERD and am on several meds because swallowing is difficult and painful. I had an esophageal dilation done last fall but it didn't do much good. I take two drugs to reduce the spasms and they are helping some, thankfully. I also have vasculitis and Crohn's lesions in my small intestine so I was diagnosed with Crohn's Disease.

I have a lot of inflammation in my hands and Raynaud's in my fingers and toes. I have weird, oval sections of inflammation in my forehead near each eyebrow and discoloration around each temple. I also have odd little "blood spots" on my torso and on my face near my mouth. My good rheumatologist was documenting all of this and keeping a close eye on my symptoms but now all I have is my good internist who is concerned but unable to diagnose and treat severe issues like this.

I've had three surgeries on my shoulders in the past two years because my tendons have been tearing. Two literally tore off the bone and had to be reattached. In February, I had to have a cryoablation done at Baylor heart hospital because something was putting my heart into frequent and very dangerous heart rhythms. In two weeks, I'm seeing an orthopedic surgeon for damage to the connective tissue and such in my hip. A cyst and deformities have developed that are causing bad pain but the hip joint itself is fine. My internist wants him to fix what he can so I can get some relief from the pain.

My body is attacking itself and I don't know where to turn. Much of this seems like symptoms of scleroderma, especially since the SCL-70 tests have been positive both times they've been run. The not-so-great rheumatologist who was here left town. People stopped going to him because he didn't do much of anything. My internist says I need a super-good, thorough rheumatologist and she's right. We just don't have one in the area.

What do I do? Is there another specialty that can help or should I just keep seeing all of the different doctors unless/until we get another rheumatologist? Right now, I'm being treated by my internist, GI doctor, cardiologist, orthopedist, and a new neurologist is going to be added. It's confusing and exhausting. I think I'd be doing better if the doctors were focusing on the root cause rather than all of the individual stuff. My internist thinks so, too.

Advice? Suggestions? Thanks for reading and I'm sorry about the length of this!

Julia

#2 Joelf

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Posted 05 April 2012 - 03:06 PM

Hi Julia,

Welcome to these forums!

I'm sorry to hear that you've been suffering with so many health problems.

I have lung involvement and am treated by a top lung hospital; however, I'm also treated by a rheumatologist, a local lung consultant and my general practitioner. I think that a lot of our members are the same and are being treated by different specialists for each symptom of this complex disease.

Unfortunately, Scleroderma is notoriously difficult to diagnose and it can be very frustrating trying to obtain a definate diagnosis, which is why we do advise our members to consult a Scleroderma specialist if possible. We have a new page ISN Guide to Scleroderma Experts and Centers and we do have a lot of very useful information on our medical pages which I hope you'll find interesting and helpful.

Kind regards,

Jo Frowde
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#3 Sandy B

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Posted 06 April 2012 - 03:58 AM

Hi Julia,

I thought I had had a bit of a rough time last year, but all you have been through certainly tops it and some. It is important to have a good rheumatologist who listens and acts on your symptoms at the very least. I am currently seen by lung, gastro and endocrine specialists. and a rheumatologist. I think I would possibly be right in saying it is quite the norm to be seen by so many different specialists depending on your symptoms because of the complexity of scleroderma. I know some on this site see scleroderma specialists which would probably be the ideal situation for you, because they know the ins and outs of the disease.

I can't really give you any advice on your situation, only that all to often you have to be your own advocate and if you think something is wrong that doctor's are missing, then you have to keep on pushing for results, you know your own body better than any one, so don't ever feel you are being a nuisance, like so many of us are made to feel sometimes. It is after all their job to find out what is wrong with you and care for you in the best way possible.

Good luck, I hope you find an excellent rheumatologist soon.

Hugs

Sandy B

#4 marsha

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Posted 06 April 2012 - 11:23 AM

Julia,
I am sorry that you are going through all this.. plain and simple IT stinks!! I was told I had Lupus, because of my ANA when I went to a Lupus specialist he told me that I did not in fact have Lupus I had Scleroderma. I asked how he could be so sure and he told me that a positive ANA with a centromere pattern was only specific to Scleroderma. Something about that centromere pattern. Have you had that test and if so did it come back positive? I believe the "blood spots" as you call them sound much like what I have all over the top of my body and those are telangiectasia, All the things you describe sound eerily like CREST.. Is there any way you can see a specialist of scleroderma? I know I had to pay out of pocket to see mine, but I am so glad that I did, He works with my Rheumatologist and I only have to see him 1 time a year. I wish you lots of luck and you have definitely found the right place .. Welcome
Marsha

#5 Amanda Thorpe

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Posted 06 April 2012 - 10:25 PM

Hello Julia

Welcome to the forums! As well as the great advice you have been given you might find it helpful to have a look at our video section, we have videos about types of scleroderma and symptoms.

I hope you find a good rheumatologist, as you already know scleroderma takes you on a long arduous journey but we're here ready to go through it with you.

Take care.
Amanda Thorpe
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#6 Teatime

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Posted 06 April 2012 - 11:37 PM

Thank you, all, for the warm welcome and information! I live about 180 miles from Dallas and I'm pretty sure that there are some sclero specialists there. My internist really wants me to be seen at the University of Texas Southwestern Medical Center. They have a good rheumatology department. But there's no way I can afford to pay for consultations and tests there. :(

We're supposed to be getting a new rheumatologist in town this summer so I'm hoping he's a good one. The last one was such a disaster that maybe the hospital was more careful and selective this time!

Marsha, that word "telangiectasia" is written often in my medical records from my first rheumatologist. I don't know how to pronounce that or what it means exactly!

Thank you for all of the links! There's so much good information here, I'd best get reading!

All best,
Julia



#7 Teatime

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Posted 06 April 2012 - 11:49 PM

Ooops, forgot a few things. First off, the last rheumatologist didn't look at my medical records and decided to take me off my immuno-suppressants to "see what happens." Well, what's happening is that the inflammation in my hands is horrible, the GI symptoms worsened (especially the difficulties swallowing), my joints hurt like mad and I've developed a dry cough and shortness of breath. My internist put me on prednisone but I'm off it for a bit, at present.

Jo, I'm concerned about the lung manifestations. Would you mind sharing what the initial symptoms are and what appropriate tests should be done?

#8 judyt

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Posted 07 April 2012 - 03:07 AM

Hello Julia,

Welcome from me too, sorry to hear that you are having a difficult time getting a good practitiioner. It is so frustrating when you can't get proper advice. Has anybody suggested to you that you keep a careful record of everything by getting copies of all reports. It is just a matter of saying that you want a copy and they should be sent to you.

"Telangiectasia" hard to spell but pronounced just the way it is spelt as far as I know. Tel-an-giec-tasia. They are the little collections of blood vessels just under the skin, usually more or less round, and most of mine are about 1/4 inch across or smaller. They don't hurt or bleed, they are just there. Most of mine are close to 50 years old and haven't changed much at all.

You have my sympathy about your changed meds. too. I had to put up with months of feeling lousy last year when one of my medications was changed without my knowledge. It took me months to work out what was wrong and then more months to get my Doctor to agree to put me back on what I was on before. I have to pay extra for it now but it is worth every cent.

Keep posting and asking questions.
Best wishes
Warm hugs from the upside down side of the world

JudyT

#9 Joelf

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Posted 07 April 2012 - 07:08 AM

Hi Julia,

It does sound as if possible you do need to be treated by a Scleroderma specialist. Although I very much enjoy telling my long suffering general practitioner how to do her job, I actually have no medical training (apart from a now out of date first aid certificate!! ;)) However, in my opinion, taking you off the immune suppressants to "see what happens?? " :emoticon-dont-know: doesn't seem to be a very good course of action!!

Apart from an overall feeling of being generally unwell and poorly, my first lung symptoms were a shortage of breath and a dry cough on exertion. At the time I was physically very fit, so noticed the decrease in my ability to exercise quickly. Thankfully my general practitioner and the local consultant I saw realised it was serious and very quickly referred me to a top lung hospital (The Royal Brompton) where I had chest xrays, CT scans, lung function tests, a bronchioscopy, a six minute walk test and innumerable blood tests. As they had seen many cases of lung problems caused by Scleroderma, they were very quickly able to identify and treat it, a fact for which I'm eternally grateful. They also referred me to The Royal Free, a top UK hospital that deals with Scleroderma. All in all, I consider myself to have been extremely fortunate but I would emphasise that each person responds differently to treatment and I was lucky that because I was so fit my lungs were in pretty good shape to start with, so the treatment I received produced very good results. I have ongoing regular six monthly lung function tests to monitor the pulmonary fibrosis (fibrosing organising pneumonia) on my lungs. I've included a link to Scleroderma Lung Involvement to give you a little more light reading! ;)

Judy's told you how to pronounce "Telangiectasia" and I've included a link to give you more information about it. I don't have this myself, but I know that a lot of our members do suffer with it.

Kind regards,

Jo Frowde
ISN Sclero Forums Manager
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International Scleroderma Network (ISN)


#10 Amanda Thorpe

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Posted 07 April 2012 - 11:32 AM

Hello Julia

There will soon be a video on site for telangiectasia so you can see how to pronounce it as well as what it is! Keep your eyes peeled on our video section.

Take care.
Amanda Thorpe
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#11 marsha

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Posted 08 April 2012 - 09:45 AM

I have just started developing them "telangiectasia" on my tongue. As JudyT said they are just there. Have you had a lung function test done yet? That will determine if you have any lung involvement. I would definitely see if there is ANY possible way to get into a specialist; like I said mine works with my Rheumatologist.

#12 maeinTexas

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Posted 11 April 2012 - 09:49 AM

Hi all,
I'm really struggling and could use some advice and direction. Mine is a long story so I apologise ahead of time!

I was first suspected of having autoimmune disease by my primary doctor 8 years ago. He sent me to a rheumatologist who was very thorough. At first he thought I had RA but I also had symptoms of irritable bowel disease and MRIs of my spine, etc. showed sacro-iliitis and spondylitis, too. I was treated with methotrexate and Remicade which improved some things but stirred up organ involvement, particularly kidneys. The MTX made me very ill (vomiting) and had to be discontinued. I was then treated with Cellcept and plaquenil.

Labwise, my ANA is sometimes positive. I've also had some of the Lupus tests come back positive repeatedly. And the last tests my good rheumatologist did included SCL-70 which came back positive. He was concerned about that so he repeated the test and it came back positive again, with almost exactly the same number. But before we could investigate that further, I moved out of the area.

Since then, I have not had good rheumatological care. The rheumatologist in my new city just continued my meds and didn't try anything else or follow up on the sclero. possibility, even though my condition wasn't stable. I do have a fantastic internal medicine doctor who is extremely worried about me and has been trying to find a good rheumatologist for me. Unfortunately, she thinks I really need to be seen by top-notch rheumatologists in Dallas but my insurance won't permit me to go to doctors in Dallas.

So, I'm being treated by a bunch of specialists focusing on their own area. I have severe GERD and am on several meds because swallowing is difficult and painful. I had an esophageal dilation done last fall but it didn't do much good. I take two drugs to reduce the spasms and they are helping some, thankfully. I also have vasculitis and Crohn's lesions in my small intestine so I was diagnosed with Crohn's Disease.

I have a lot of inflammation in my hands and Raynaud's in my fingers and toes. I have weird, oval sections of inflammation in my forehead near each eyebrow and discoloration around each temple. I also have odd little "blood spots" on my torso and on my face near my mouth. My good rheumatologist was documenting all of this and keeping a close eye on my symptoms but now all I have is my good internist who is concerned but unable to diagnose and treat severe issues like this.

I've had three surgeries on my shoulders in the past two years because my tendons have been tearing. Two literally tore off the bone and had to be reattached. In February, I had to have a cryoablation done at Baylor heart hospital because something was putting my heart into frequent and very dangerous heart rhythms. In two weeks, I'm seeing an orthopedic surgeon for damage to the connective tissue and such in my hip. A cyst and deformities have developed that are causing bad pain but the hip joint itself is fine. My internist wants him to fix what he can so I can get some relief from the pain.

My body is attacking itself and I don't know where to turn. Much of this seems like symptoms of scleroderma, especially since the SCL-70 tests have been positive both times they've been run. The not-so-great rheumatologist who was here left town. People stopped going to him because he didn't do much of anything. My internist says I need a super-good, thorough rheumatologist and she's right. We just don't have one in the area.

What do I do? Is there another specialty that can help or should I just keep seeing all of the different doctors unless/until we get another rheumatologist? Right now, I'm being treated by my internist, GI doctor, cardiologist, orthopedist, and a new neurologist is going to be added. It's confusing and exhausting. I think I'd be doing better if the doctors were focusing on the root cause rather than all of the individual stuff. My internist thinks so, too.

Advice? Suggestions? Thanks for reading and I'm sorry about the length of this!

Julia



Hi Julia,
I live in Abilene Tx. and I have a rheumatologist in San Angelo.
Sorry I'd love to help you but All of this is all new to me.
Blessings

#13 Amanda Thorpe

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Posted 11 April 2012 - 10:55 AM

Hello MaeinTexas

Welcome to the forums and you help by just posting by the way. I'm glad you have a good rheumatologist and maybe you'll tell us a bit more about yourself when you're ready.

Take care.
Amanda Thorpe
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#14 Shelley Ensz

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Posted 11 April 2012 - 11:05 AM

Hello Julia and Mae,

I'm glad that you have both joined Sclero Forums, and am sending my best wishes and warm hugs your way.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#15 Joelf

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Posted 11 April 2012 - 02:29 PM

Hi MaeinTexas,

Welcome to these forums!

It's great to hear from you and I hope you'll post again and let us get to know you.

:emoticons-group-hug:

Kind regards,

Jo Frowde
ISN Sclero Forums Manager
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#16 debonair susie

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Posted 11 April 2012 - 04:20 PM

Hi Julia and MaeinTexas,

I'm just taking this opportunity to welcome you BOTH to these Forums also! We appreciate how each of you must feel, as each of us shares experience with chronic illness ourselves, or as caregivers to loved ones who do.
As a result of that, I join Jo, Shelley and the other ladies above, by sending a group hug :emoticons-group-hug: for you!
We look forward to more posts from each of you!
Special Hugs,

Susie Kraft
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#17 Teatime

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Posted 11 April 2012 - 08:00 PM

Mae,
I'm in Abilene, too!! Which rheumatologist are you seeing in San Angelo? He said I might want to go to the older, more experienced rheumatologist. Can't remember his name. But my internist said I need an expert and someone on the cutting edge of new discoveries and therapies. She wants me to see someone at UT Soutwestern.

To all,
Thanks for all of the info, support and hugs! I'm still reading. I've been in a lot of pain since the weekend -- it hurt like mad to take a deep breath -- so I apologise for not posting until now. I'm resorting to pain medication but it is getting the horrible pain under control.