1. < Autoimmune Diseases

Started with Chron's went to Raynaulds, now Crest Syndrome?

Posted by smalone59 @smalone59, May 19 7:18am

it started in my 30's with Chrons, 2009 I was diagnosed with Rayaulds, and now in my 60's last year I was diagnosed with Crest Syndrome. What can I do to slow down or stop what is happening to me. I can't get answers from my doctor or anyone and just recently I found out I have to see a vascular surgeon for Fibromuscular dysplasia. I'm so over all this crap.

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Mentor
John, Volunteer Mentor | @johnbishop | May 19 7:56am

Hello @smalone59, Welcome to Connect. I can't imagine how difficult it has to be for you dealing with the different health struggles 30 plus years. I know it has to be discouraging. I'm hoping that connecting with others may help provide some answers for you. There are a couple of discussions that I think you might find helpful.

--- Limited Scleroderma or CREST Syndrome: What helps?
https://connect.mayoclinic.org/discussion/crest-syndrome/
--- FMD (fibromuscular dysplasia): https://connect.mayoclinic.org/discussion/fmd/

You mentioned having an upcoming appointment with a vascular surgeon. One thing that has helped many including myself is take a list of questions you have with you to appointments. There are some good tools to help you plan your conversation on the Patient Revolution website here - https://www.patientrevolution.org/tools.

When do you see the vascular surgeon?

REPLY
2 replies
windyshores | @windyshores | May 19 7:56am

Is there a scleroderma clinic near you? I found that general rheumatologists don't know that much about scleroderma (Crest syndrome is a form of scleroderma) and I got an appointment with one who is part of a specialized clinic.

My scleroderma specialist refers me to monitoring tests of heart, lungs, kidneys and GI.

There is a Facebook group for scleroderma that you might benefit from.

REPLY
2 replies
smalone59 | @smalone59 | May 19 1:20pm
In reply to @johnbishop "Hello @smalone59, Welcome to Connect. I can't imagine how difficult it has to be for you..." + (show)
@johnbishop

Hello @smalone59, Welcome to Connect. I can't imagine how difficult it has to be for you dealing with the different health struggles 30 plus years. I know it has to be discouraging. I'm hoping that connecting with others may help provide some answers for you. There are a couple of discussions that I think you might find helpful.

--- Limited Scleroderma or CREST Syndrome: What helps?
https://connect.mayoclinic.org/discussion/crest-syndrome/
--- FMD (fibromuscular dysplasia): https://connect.mayoclinic.org/discussion/fmd/

You mentioned having an upcoming appointment with a vascular surgeon. One thing that has helped many including myself is take a list of questions you have with you to appointments. There are some good tools to help you plan your conversation on the Patient Revolution website here - https://www.patientrevolution.org/tools.

When do you see the vascular surgeon?

Jump to this post

The end of June 25th I think.

REPLY
smalone59 | @smalone59 | May 19 1:24pm
In reply to @windyshores "Is there a scleroderma clinic near you? I found that general rheumatologists don't know that much..." + (show)
@windyshores

Is there a scleroderma clinic near you? I found that general rheumatologists don't know that much about scleroderma (Crest syndrome is a form of scleroderma) and I got an appointment with one who is part of a specialized clinic.

My scleroderma specialist refers me to monitoring tests of heart, lungs, kidneys and GI.

There is a Facebook group for scleroderma that you might benefit from.

Jump to this post

I was scheduled to see a Dr. Bell but I lost my insurance, I didn't get to go. It took me a year just to get that appointment now I don't know when/or if I'll ever get in.

REPLY
smalone59 | @smalone59 | May 24 4:18pm
In reply to @windyshores "Is there a scleroderma clinic near you? I found that general rheumatologists don't know that much..." + (show)
@windyshores

Is there a scleroderma clinic near you? I found that general rheumatologists don't know that much about scleroderma (Crest syndrome is a form of scleroderma) and I got an appointment with one who is part of a specialized clinic.

My scleroderma specialist refers me to monitoring tests of heart, lungs, kidneys and GI.

There is a Facebook group for scleroderma that you might benefit from.

Jump to this post

I don't know of any in the local Indiana area. My doctor only recommend a rheumatologist

REPLY
1 reply
smalone59 | @smalone59 | May 24 4:22pm
In reply to @johnbishop "Hello @smalone59, Welcome to Connect. I can't imagine how difficult it has to be for you..." + (show)
@johnbishop

Hello @smalone59, Welcome to Connect. I can't imagine how difficult it has to be for you dealing with the different health struggles 30 plus years. I know it has to be discouraging. I'm hoping that connecting with others may help provide some answers for you. There are a couple of discussions that I think you might find helpful.

--- Limited Scleroderma or CREST Syndrome: What helps?
https://connect.mayoclinic.org/discussion/crest-syndrome/
--- FMD (fibromuscular dysplasia): https://connect.mayoclinic.org/discussion/fmd/

You mentioned having an upcoming appointment with a vascular surgeon. One thing that has helped many including myself is take a list of questions you have with you to appointments. There are some good tools to help you plan your conversation on the Patient Revolution website here - https://www.patientrevolution.org/tools.

When do you see the vascular surgeon?

Jump to this post

I relooked it is June at 1:30 they want to see if my neck is bad enough to require stints put in both sides. Instead of my neck veins being straight they look like a messed-up road map, to many twists and turns. Just one more thing, I should be used to it by now.

REPLY
Mentor
Becky, Volunteer Mentor | @becsbuddy | May 24 6:08pm
In reply to @smalone59 "I don't know of any in the local Indiana area. My doctor only recommend a rheumatologist" + (show)
@smalone59

I don't know of any in the local Indiana area. My doctor only recommend a rheumatologist

Jump to this post

@smalone59 I’m sorry that you’re having such a difficult time. I would suggest that you call a university medical center or university teaching hospital or look for a comprehensive medical center in your state. You may have to drive a distance, but your health is worth it!
This might be a good resource for you:
https://autoimmune.org/resource-center/finding-a-physician/
The site also lists large hospitals, that specialize in autoimmune, throughout the country. This site from the autoimmune association lists tips on getting a diagnosis : https://autoimmune.org/resource-center/diagnosis-tips/
I know it’s a long weekend but that gives you a chance to read through all the discussions and make a list of what you want to know. Do you think this site will help?

REPLY
1 reply
smalone59 | @smalone59 | May 25 11:48am
In reply to @becsbuddy "@smalone59 I’m sorry that you’re having such a difficult time. I would suggest that you call..." + (show)
@becsbuddy

@smalone59 I’m sorry that you’re having such a difficult time. I would suggest that you call a university medical center or university teaching hospital or look for a comprehensive medical center in your state. You may have to drive a distance, but your health is worth it!
This might be a good resource for you:
https://autoimmune.org/resource-center/finding-a-physician/
The site also lists large hospitals, that specialize in autoimmune, throughout the country. This site from the autoimmune association lists tips on getting a diagnosis : https://autoimmune.org/resource-center/diagnosis-tips/
I know it’s a long weekend but that gives you a chance to read through all the discussions and make a list of what you want to know. Do you think this site will help?

Jump to this post

Thank you I honestly didn't even think of a teaching hospital. I think the closest one is in Indianapolis. I will definitely check it out.

REPLY
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