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#1 spudnic

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Posted 30 October 2011 - 10:06 PM

Hi! My name is Nicole. I joined the group here to ask a few questions, look around, etc. I chuckled when I read in the new user guidelines about "cyberchondria". I may have been guilty of this a time or two in the past, but really do try not to get carried away. So, instead of self-diagnosing myself into an early grave, I'd love to chat with you all!

My history: Since my early 20's after moving from sunny California to less sunny (at least in the winter) Idaho, I've suffered from (admittedly self-diagnosed) Raynauds. Mine started in the nipples. Less common, I've read, but no less painful for it. Never had an attack while breastfeeding, but give me a cold drink in an air conditioned room.... oh boy! It still happens, though thankfully less frequently. I also have attacks of the feet, though I did not observe the classic tri-color change until very recently. One day when my feet were little blocks of ice and my toes were completely numb, I looked at the bottom of my feet and they were white, verging on purple. When I soaked them in warm water, WOW did that hurt! Turned beet red and finally thawed out. Can happen seemingly at anytime, whether out in the cold, or inside with sock on. Go figure.

So, at this point (about a year ago) I suspected I had Raynauds and thought no more of it. I'd need to try and keep 'em warm, etc, etc. Then I started having pain and stiffness in my finger joints as well as almost nightly reflux/heartburn, both of which are very uncommon for me. Of course, I looked at several websites for symptoms and up popped Sclero. Now, I did say that I try not to panic, but I am a bit worried. I know that Scleroderma is a very rare disease and can be next to impossible to diagnose.

So here is my question: What would you do? I have a few symptoms (possible Raynauds, joint pain, reflux, possible telangiectasia) that, taken together could be Sclero, but also could easily be nothing but a big coincidence. I don't really have the financial means to got to a specialist and say "Run all the tests!". On the other hand, I don't really want to ignore my body/health when something new and possibly negative starts happening. So, should I get this stuff checked out? How should I approach it? I don't want to sound like a lunatic at the doctor's saying "I just know I have (insert rare disease here)!!!"

Oh and one other thing. I get very cold hads a lot, but have never seen them turn white. What is the likelyhood of the Raynauds to get worse/progress to my hands over time?

I'd love to hear from some of you all about this! Any advice or thoughts of any kind are welcome. :)

Nicole

#2 Amanda Thorpe

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Posted 31 October 2011 - 12:50 AM

Hello Nicole

Welcome to the forums!

Here at ISN we are not medically trained so no one is going to be able to give you a diagnosis of Raynaud's or anything else. Raynaud's can be diagnosed by a general doctor so seeing one is going to be your starting point because as well as getting an official diagnosis, or not, you can discuss your other symptoms at the same time. It may all come to nothing but you have to start somewhere.

In the meantime here is some information about Raynaud's that you may find helpful including treatment and preventions.

Take care.
Amanda Thorpe
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#3 judyt

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Posted 31 October 2011 - 02:06 AM

Hi Nicole,
As Amanda says, a General Practitioner should be able to set you off in the right direction, but I think you do need to exercise a little bit of caution. There are plenty of doctors out there still who would shrug their shoulders and say they don't know, although they should all know Raynauds for a start.

You probably have somebody you see most times you need to and you should be able to judge whether that person is a shrugger or on to it.

The most important thing is that you find somebody who will listen then hopefully refer you on to a Sclero Specialist.

I went through 40 years of asking doctors if they had any idea what my telangectasia were, or why my cuticles were as deranged as they seemed to be, or why I had a bowel prolapse and terrible varicose veins in spite of never been pregnant and not having to stand all day. In the end it was a young doctor in the Vascular Clinic at the hospital where I had been sent because of my ankle ulcers, who recognised the list of symptoms and put a name to it. I guess in some ways it was just luck that got me to him, but Sclero is a vascular disease so if anybody should know it is somebody like him who is recently graduated and up with current knowledge.

When I was finally admitted to hospital in an emergency the Gastroenterologist who attended to me asked why they didn't already know me. It was because over the years each problem had been dealt with privately by a specialist in that field. A vein surgeon for my varicose veins, a Colorectal Surgeon for my prolapse, a Gastro man who stretched my esophagus when I could no longer swallow properly, a dermatologist tried to cure my cuticles with tri-cyclic antibiotics, a neurologist tried to help with my Migraines (not a usual sclero symptom but vascular so distantly related) and nobody bothered about the Raynauds because there was nothing you could do about that :excl: .


My advice is to get yourself off to somebody suitable lickety-split and start getting yourself some help, whatever it is you could do with some proper advice.

Warm Hugs and Best wishes on your journey.

JudyT

#4 Joelf

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Posted 31 October 2011 - 02:23 AM

Hi Nicole,

Welcome to these forums!

As Amanda has stated, we're none of us medically trained (although I do enjoy telling my long suffering doctor how to do her job! ;) ) so it's impossible to make a diagnosis from the information you've given. I do suffer with Raynaud's so can sympathise with you over the pain and discomfort it causes.

I've included a link to Reflux to give you some more information. I would advise caution, though, regarding looking up details of Scleroderma on the internet as there is plenty of alarmist and scary information out there.....far better to use our ISN medical pages for up to date and true information! Again as Amanda has suggested, it would probably be best to start with your own primary doctor if you're worried about your symptoms.

I'm very pleased that you've found our forums and am looking forward to hearing more from you.

:emoticons-group-hug:

Kind regards,

Jo Frowde
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#5 Sheryl

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Posted 31 October 2011 - 07:46 AM

Nicole, get into orbit as your Spudnic. You need to take care of any issues you are going through. Finding a Rheumatologist whom specializes in Scleroderma would be a good option. A simple blood test can usually tell the doctors that something is going on in your system. Welcome to our ISN forum. Ask any questions you would like opinions or first hand information on. We can only let you in on what each of us might personally be going through, which is a wide spectrum of things. Enjoy all of our reading materials. Jump into any of our chat room sessions that go on during the week. There you can freely talk and ask away. We get into very personal physical problems that we each may be dealing with at one time or another. We also talk nonsense and about cooking or anything that comes to mind. Welcome to ISN.
Strength and Warmth,
Sheryl

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#6 spudnic

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Posted 31 October 2011 - 02:54 PM

Thanks for the warm welcome!

I know no one will (or should, for that matter) give me medical advice or opinions. I mostly just wanted to see if my story sounds familiar to anyone. I have never met anyone who has Raynauds, so I have no real-life baseline to compare myself to. According to everything I have read (almost all of the major online medical sites, including this one) having Raynauds only in my feet and nipples and never having attacks in my hands is unusual. But like I said, it's the recent addition of other possibly related symptoms that caught my attention. I'm thinking I may wait to talk to a doctor until after the first of the year. That way, I can track everything and see if the other things stay or resolve themselves. If my joint pain stays or gets worse, if I get a few more little red spots on my face or arms, or if my heartburn continues for several more months, then I'll have a history to show the doctor. I do have a family history of arthritis and bursitis, and my mom has the type of telangiectasia that are little lines on her face, but those are just from age, I think.
I really do not want to stress, since it can trigger attacks. If I keep and eye on things, I think I'll feel in control a bit.

One more question. I have not seen anything like this in all my reading, but maybe someone can tell me if this could be related. Several years ago I had a very strange episode of facial numbness along with a bout of vertigo. My right cheek under my eye went numb and tingly for several hours. It slowly spread to my eyebrow and also a patch at the back of my head before going away. Well, it freaked me out and I had an MRI to see if something neurological was going on. My scan came back clear, and nothing else ever happened. Has anyone ever experienced this? The doctor said it could be possibly nerve related or simply stress. It makes me wonder if all this recent stuff could be related to that episode at all. I know stress can really play havoc with our bodies. Hmmm...just more things to ponder.

Anyhow, thanks again for the welcome! I will definitely browse around and read up on things. :)
Nicole

#7 Amanda Thorpe

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Posted 31 October 2011 - 03:11 PM

Hello Nicloe

Here's a photo of a Raynaud's attack so you can get an idea what it can look like, I say can because although I have Raynaud's my hands and feet have only ever been white but then mine is very mild.

Take care.
Amanda Thorpe
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#8 Sweet

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Posted 01 November 2011 - 10:52 AM

Hi Nicole!

Welcome to our family. I know it can be overwhelming and scary when you start seeing new symptoms etc. I do recommend you see a Rhuematologist. Without health it's hard to enjoy anything else in life. You might be surprised that the doctor may not have to run many tests, in order to give you an idea of what is happening with your body. Please keep us posted. I look forward to knowing you better!
Warm and gentle hugs,

Pamela
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