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Sjögren's Syndrome Message Board
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Old 01-19-2012, 04:05 PM   #1
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Need help for mom

My mom was diagnosed a few years ago, with Sjogren's. Most of her discomfort is in her eyes and lack of saliva. Now she is having pain in the outside of her leg, in the thigh. Trying to find out if this could be another symptom of her "syndrome" She isn't currently seeing a doctor other than her GP. Where is the best place to start investigating this disorder?

 
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Old 01-20-2012, 10:31 AM   #2
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Re: Need help for mom

A Rheumatologist is a great place to start. Write down your questions prior to the appointment and that will hopefully help getting you the info you are looking for.

 
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Old 01-20-2012, 04:43 PM   #3
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Re: Need help for mom

Quote:
Originally Posted by gdiluca View Post
A Rheumatologist is a great place to start. Write down your questions prior to the appointment and that will hopefully help getting you the info you are looking for.
Thank you for your help. This is new to me and we just lost my dad last year, so I'm trying to learn as much as I can.

 
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Old 01-23-2012, 10:31 AM   #4
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Re: Need help for mom

I'm sorry for your loss.
I just wanted to let you know that we patients often blame our AI disease for everything, but it is often not the culprit. I have not heard of thigh pain as a symptom of either primary or secondary Sjogren's but I am just a patient, and symptoms can be so different for different patients. I do hope that your mother's pain is nothing serious.

 
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Old 01-23-2012, 02:07 PM   #5
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Re: Need help for mom

Quote:
Originally Posted by gdiluca View Post
I'm sorry for your loss.
I just wanted to let you know that we patients often blame our AI disease for everything, but it is often not the culprit. I have not heard of thigh pain as a symptom of either primary or secondary Sjogren's but I am just a patient, and symptoms can be so different for different patients. I do hope that your mother's pain is nothing serious.

Thank you G... I am in the process of setting up an appointment with a doctor for mom's care. This is all new stuff for me, and I was trying to see what other patients have experienced. The muscle exercises that her PCP gave her where to painful for her to do on her own, and medicare wouldn't pay for her therapy. From all that I've read, she could be experience Raynaud's phenomina(?) also, with the coldness of her feet. I don't know if this is related to her Sjogren's or not, just exploring for now. I know all patients are different in their care, but how often do you visit your doctor? I have so much to learn!!!

 
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Old 01-24-2012, 10:38 AM   #6
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Re: Need help for mom

Raynaud's can be primary or secondary to an autoimmune disease. I have it in both my fingers and toes, secondary to CREST, as is my sicca, or secondary Sjogren's. I see my Rheumatologist every 4-6 months now, but although I am treated for the secondary Sjogren's, that is not my main diagnosis, and I take some drugs that need monitoring, so my appt's are usually quick checkins. Each patient is different and each Dr is different. I usually go by the criteria of "are my symptoms being treated as best as can be" as opposed to the number of times I see the Dr.

 
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Old 01-25-2012, 05:23 PM   #7
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Re: Need help for mom

G, Thanks for the information. I talked to mom tonight and she is good with me finding a doctor for her to see as a new patient. Apparently she wasn't happy with the other one and never went back, that's been several years ago. Unfortunatley, she doesn't know if hers is primary or secondary Sjogren's. Thanks also for letting me know how often you see your dr and that each patient is different. I have been reading alot, and understood that it's common to unique situations. So, I appreciate your information and help you will continue to help me along the way.

 
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Old 01-26-2012, 10:15 AM   #8
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Re: Need help for mom

I hope your Mom likes her new Dr when you find one. I know what it is like to not be happy with one. Glad to be of help! There are lots of fine folks on these boards ready with support for you and your Mom.

 
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Old 01-26-2012, 02:07 PM   #9
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Re: Need help for mom

I am in the process of having mom's PCP do a referral to a new doctor. Hope this works out better for her.

When dad passed away, I had so many questions about the manner in which he died, that it consumed me. I received so much help from this site as well as Cancer Compass, that it was overwhelming to me that complete strangers would reach out to support me. With all of the tragedy they had going on in their lives, they were still there, phenominal! Anyway, I know there are so many wonderful souls that are more than happy to share ther experiences in hopes it will help. I'm so grateful.

Thank you, again

 
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