| Posted By |
Message |
hbugal
Lesigh
Member since 2/07 15928 total posts
Name:
|
Does anyone have Raynauds?
If you do do you have another condition or just the Raynauds?
TIA...
|
Posted 12/8/08 11:19 PM  |
| |
|
cjik
Welcome 2010!
Member since 2/06 8879 total posts
Name:
|
Re: Does anyone have Raynauds?
I do not, but I have a friend who does, and I know a little about it since I have lupus and some people with lupus develop this.
What would you like to know?
|
| Posted 12/9/08 12:22 PM |
| |
|
imyself
Member since 10/06 2938 total posts
Name:
me
|
Re: Does anyone have Raynauds?
I have secondary Raynauds. My primary is undifferentiated connective tissue disorder (basically they have no idea what is wrong or why I have the anti bodies I have).
|
| Posted 12/9/08 2:00 PM |
| |
|
hbugal
Lesigh
Member since 2/07 15928 total posts
Name:
|
Re: Does anyone have Raynauds?
Posted by cjik
I do not, but I have a friend who does, and I know a little about it since I have lupus and some people with lupus develop this.
What would you like to know?
I have it...Ive had it for awhile...Im just trying to figure out what else is wrong with me. My primary care doctor is really no help. I have a few appointments coming up with some specialists and I want to have all my ducks in a row before I go....
Does she have an underlying cause or does she just have the Raynauds?
|
| Posted 12/9/08 3:39 PM |
| |
|
hbugal
Lesigh
Member since 2/07 15928 total posts
Name:
|
Re: Does anyone have Raynauds?
Posted by imyself
I have secondary Raynauds. My primary is undifferentiated connective tissue disorder (basically they have no idea what is wrong or why I have the anti bodies I have).
What are your symptoms of a connective tissue disorder. This was actually brought up to me by a friend of mine who is a doctor (but not my doctor). What tests did have etc....TIA
|
| Posted 12/9/08 3:40 PM |
| |
|
cjik
Welcome 2010!
Member since 2/06 8879 total posts
Name:
|
Re: Does anyone have Raynauds?
Posted by hbugal
I have it...Ive had it for awhile...Im just trying to figure out what else is wrong with me. My primary care doctor is really no help. I have a few appointments coming up with some specialists and I want to have all my ducks in a row before I go....
Does she have an underlying cause or does she just have the Raynauds?
No underlying cause. She pursued a diagnosis of some kind for quite awhile---she's is unusually cold, even bundling up doesn't help, and over the summer it got to the point where she couldn't stand going to see a movie (AC too cold). It's funny, we both got diagnosed with these disorders around the same time.
I go to a rheumotologist for lupus--my primary referred me to him when my bloodwork came back positive for lupus. I think you should bring or ask your primary care doctor to share any tests you have already done, but the specialist may want to order new ones. I know my friend had a lot of bloodwork drawn, though she didn't mention any other tests.
Good luck! I hope you will get good or fairly good news from the doctor.
|
| Posted 12/10/08 9:31 AM |
| |
|
hbugal
Lesigh
Member since 2/07 15928 total posts
Name:
|
Re: Does anyone have Raynauds?
Posted by cjik
Posted by hbugal
I have it...Ive had it for awhile...Im just trying to figure out what else is wrong with me. My primary care doctor is really no help. I have a few appointments coming up with some specialists and I want to have all my ducks in a row before I go....
Does she have an underlying cause or does she just have the Raynauds?
No underlying cause. She pursued a diagnosis of some kind for quite awhile---she's is unusually cold, even bundling up doesn't help, and over the summer it got to the point where she couldn't stand going to see a movie (AC too cold). It's funny, we both got diagnosed with these disorders around the same time.
I go to a rheumotologist for lupus--my primary referred me to him when my bloodwork came back positive for lupus. I think you should bring or ask your primary care doctor to share any tests you have already done, but the specialist may want to order new ones. I know my friend had a lot of bloodwork drawn, though she didn't mention any other tests.
Good luck! I hope you will get good or fairly good news from the doctor.
Thanks...I do have my blood work from my primary care. I want them to be able to compare results.
Funny thing is that Im just the opposite...Im always hot...
|
| Posted 12/10/08 11:46 AM |
| |
|
RobinG
LIF Adolescent
Member since 1/08 595 total posts
Name:
Robin
|
Re: Does anyone have Raynauds?
I have it in my feet, but I have had no other diagnosis...it is very annoying, especially in the winter. I only started noticing it a few year ago, and am praying that it does not make it to my hands. I think it's a lot easier to keep your feet insulated.
|
| Posted 12/10/08 9:37 PM |
| |
|
casey31
Mommy of 3!
Member since 5/05 2967 total posts
Name:
Mommy to two boys and a girl
|
Re: Does anyone have Raynauds?
I have it pretty severly since I was 12. I cannot go into very cold water or touch snow at all. My fingers turn dead white and are VERY painful. However, I have no underlying conditions.
|
| Posted 12/11/08 11:58 AM |
| |
|
imyself
Member since 10/06 2938 total posts
Name:
me
|
Re: Does anyone have Raynauds?
Posted by hbugal
Posted by imyself
I have secondary Raynauds. My primary is undifferentiated connective tissue disorder (basically they have no idea what is wrong or why I have the anti bodies I have).
What are your symptoms of a connective tissue disorder. This was actually brought up to me by a friend of mine who is a doctor (but not my doctor). What tests did have etc....TIA
I have fatigue, elevated liver enzymes and joint pain and swelling. I was sickly as a child and young adult. I also test positive for ANA and APS. Down the road it may develop into something more substantial but for now I am happy to say I am ok. Taking baby aspirin helps with my Raynauds and hand issues. Apparently I have sticky platelets .
My hands and feet turn completely white and hurt. It occurs when cold or from lack of movement. Wearing gloves and socks don't help. The best I felt in my entire life was when I was pregnant. I had no pain. Since having ds it is back with a vengeance. I see rhuematology once a year for antibody checks or more often if I am having problems.
|
| Posted 12/11/08 4:33 PM |
| |
|
hbugal
Lesigh
Member since 2/07 15928 total posts
Name:
|
Re: Does anyone have Raynauds?
Posted by imyself
Posted by hbugal
Posted by imyself
I have secondary Raynauds. My primary is undifferentiated connective tissue disorder (basically they have no idea what is wrong or why I have the anti bodies I have).
What are your symptoms of a connective tissue disorder. This was actually brought up to me by a friend of mine who is a doctor (but not my doctor). What tests did have etc....TIA
I have fatigue, elevated liver enzymes and joint pain and swelling. I was sickly as a child and young adult. I also test positive for ANA and APS. Down the road it may develop into something more substantial but for now I am happy to say I am ok. Taking baby aspirin helps with my Raynauds and hand issues. Apparently I have sticky platelets .
My hands and feet turn completely white and hurt. It occurs when cold or from lack of movement. Wearing gloves and socks don't help. The best I felt in my entire life was when I was pregnant. I had no pain. Since having ds it is back with a vengeance. I see rhuematology once a year for antibody checks or more often if I am having problems.
Do you see the rheumatologist for the connective tissue disorder?
I went to the endo today and was diagnosed with Hashimoto's. While he says that this could be the reason behind my current joint pain he thinks there is something else going on..(based upon my history)
I dont even know where to begin....but at least Ive got one diagnoses over and done with...
|
| Posted 12/11/08 6:17 PM |
| |
|
|
|
Re: Does anyone have Raynauds?
Do you see the rheumatologist for the connective tissue disorder?
I went to the endo today and was diagnosed with Hashimoto's. While he says that this could be the reason behind my current joint pain he thinks there is something else going on..(based upon my history)
I dont even know where to begin....but at least Ive got one diagnoses over and done with...
Sorry to hear that you were diagnosed with Hashimoto's but I am glad that you are beginning to get some answers. My dad has scleroderma. He has Raynaud's and it is a classic scleroderma symptom. He was diagnosed based on having a very classic case in all ways. His bloodwork is normal but some scleroderma patients do not have normal bloodwork. The disease has similarities to lupus. For more information, see www.roadback.org. My dad is active on their bulletin board and keeps a list of rheumatologists who believe in the treatment protocol that has helped him. He is always happy to talk anyone's ear off about his knowledge of scleroderma, lupus and several other related diseases. 
|
| Posted 12/11/08 7:33 PM |
| |
|
imyself
Member since 10/06 2938 total posts
Name:
me
|
Re: Does anyone have Raynauds?
Posted by hbugal
Do you see the rheumatologist for the connective tissue disorder?
I went to the endo today and was diagnosed with Hashimoto's. While he says that this could be the reason behind my current joint pain he thinks there is something else going on..(based upon my history)
I dont even know where to begin....but at least Ive got one diagnoses over and done with...
Yup I see Rheumatology for the UCTD. My doctor ran all sorts of tests to figure out what was going on. At my annual visit he rechecks all my antibody levels, asks about amount of pain I am in and checks my joints. When I am done having kids he will be doing a bone density test since I have to be on blood thinners when pregnant. I would ask for a referral to see Rheumatology. Not sure where you live but I see one is Smithtown that I really like.
|
| Posted 12/13/08 5:08 PM |
| |
|
maiden
Whoa!
Member since 5/08 1814 total posts
Name:
T
|
Re: Does anyone have Raynauds?
I have it too. I have had it my whole life. I have not been diagnosed with anything specific, but I have about 17 - 20 symptoms that don't seem to fit together, some serious and some not serious. All of my tests have been pretty normal (and I have had a lot), although some type of anti body is slightly elevated, but the dr. didn't think that it meant much.
My mother has Fibromyalgia, but my symptoms don't fit classic Fibromyalgia. Chances are, I probably have some type of autoimmune thing, inflammation, or whatever. Right now, they don't know much about some of these types of conditions.
Good luck!
|
| Posted 12/13/08 6:04 PM |
| |
|
hbugal
Lesigh
Member since 2/07 15928 total posts
Name:
|
Re: Does anyone have Raynauds?
Posted by imyself
Posted by hbugal
Do you see the rheumatologist for the connective tissue disorder?
I went to the endo today and was diagnosed with Hashimoto's. While he says that this could be the reason behind my current joint pain he thinks there is something else going on..(based upon my history)
I dont even know where to begin....but at least Ive got one diagnoses over and done with...
Yup I see Rheumatology for the UCTD. My doctor ran all sorts of tests to figure out what was going on. At my annual visit he rechecks all my antibody levels, asks about amount of pain I am in and checks my joints. When I am done having kids he will be doing a bone density test since I have to be on blood thinners when pregnant. I would ask for a referral to see Rheumatology. Not sure where you live but I see one is Smithtown that I really like.
Smithtown would be perfect...can you FM me the information?
|
| Posted 12/13/08 7:05 PM |
| |
|
imyself
Member since 10/06 2938 total posts
Name:
me
|
Re: Does anyone have Raynauds?
Posted by hbugal
Posted by imyself
Posted by hbugal
Do you see the rheumatologist for the connective tissue disorder?
I went to the endo today and was diagnosed with Hashimoto's. While he says that this could be the reason behind my current joint pain he thinks there is something else going on..(based upon my history)
I dont even know where to begin....but at least Ive got one diagnoses over and done with...
Yup I see Rheumatology for the UCTD. My doctor ran all sorts of tests to figure out what was going on. At my annual visit he rechecks all my antibody levels, asks about amount of pain I am in and checks my joints. When I am done having kids he will be doing a bone density test since I have to be on blood thinners when pregnant. I would ask for a referral to see Rheumatology. Not sure where you live but I see one is Smithtown that I really like.
Smithtown would be perfect...can you FM me the information?
It is in my Outlook at work. I will send it first thing in the morning. 
|
| Posted 12/14/08 10:46 AM |
| |
|
