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Raynaud's testing this week


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#1 msjess

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Posted 25 August 2013 - 01:12 PM

Hello folks, I am going on Wednesday to get testing done to either confirm or deny Raynaud's. The vascular surgeon I saw a week ago suggested it and set it up, after I told her about my upcoming rheumatology appointment. What should I expect when I go in? I will be going to vascular lab and they are performing tests on hands and then feet.

Also updating my other threads: I have requested and received the majority of my medical records - but there were someone else's records mixed in so I have to find out if they have been stuffing my stuff in that other person's file as well. ha.

According to that paperwork, I found out that I have reactive gastropathy (which upon further reading could have a differential diagnosis for GAVE), I have ulnar minus variation in both hands (which can be due to avascular necrosis?) and I have degenerative changes (moderate) in my spine/lumbosacral region. I also have chondromalacia in my knee.

None of this had ever been brought up to me before in appointments? My primary also is listing under my current problems "lupus" and has been listing it that way for a year. At this point I am still waiting on my rheumatology appointment in October. Primarily experiencing joint pain in the wrists/fingers, with minor swelling/redness. The itchiness/burning is pretty much history, thank goodness, at least for the time being.

I forgot to add that the recent stress testing that I underwent and ECG show that I have both tricuspid and pulmonary valve regurgitation. I don't understand why those two issues are considered "normal" on stress testing when I have history of fainting/dizziness, blood pressure issues, and feel my heart racing at times. I also read on a full halter monitor report that I have Premature ventricular contractions (PVCs) that happened 29 times in a 24 hour period. This was also noted on my stress testing (Rare PVC noted, it read).

The other issue I saw on reading the full reports - the xray of my chest last summer when I was experiencing pleurisy - said that I have atelectasis in the base of my lungs? I looked this up and it also seems to run with autoimmune issues, and I wonder if this and the heart valve issues may occur in scleroderma.

I am amazed that the doctors fail to give me the full info on these reports when I meet with them in person, and am a convert - I will always ask for the printed reports from now on.

Thank you to everyone for reading my updates and answering my questions about scleroderma and the diagnosis process. You've all been so helpful.

#2 Joelf

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Posted 26 August 2013 - 01:00 PM

Hi Jess,

 

Thanks for letting us have an update. It's rather unfortunate, to say the least, that your medical records have been muddled up with another patient!

 

I've found a link for you from the Mayo Clinic about Raynaud's Tests and Diagnosis and there's also some information about Preparing for your Appointment which I hope you'll find helpful and informative.

 

I do hope that your appointment with the rheumatologist in October will be able to clarify things a little more for you.

 

Kind regards, 


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#3 Shelley Ensz

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Posted 26 August 2013 - 05:39 PM

Hi Jess,

 

I am glad you have learned the importance of collecting your own medical records.  It's all quite astonishing, isn't it?  I could not even believe everything I uncovered in my medical records.

 

In my case, I found that one medical center had two separate medical files for me. I always felt dizzy when I left appointments there, as nothing ever seemed to make sense to me. Sometimes they pulled one chart, sometimes the other.

 

Never, ever assume that any doctor is dealing with a full deck of your medical information. Always keep an organized set of your medical history for yourself.

 

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Shelley Ensz
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Hotline and Donations: 1-800-564-7099

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

#4 Amanda Thorpe

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Posted 28 August 2013 - 02:13 AM

Hello Jess

 

It may be the last thing we need as people dealing with a chronic illness but we have to be on the ball here, get reports and challenge what you don't agree and query what you don't understand. 

 

Take care and keep posting.


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#5 msjess

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Posted 28 August 2013 - 09:34 AM

Thanks everyone. I had the testing done this morning. The technician said my circulation looks good, but he did see what he would interpret as a Raynaud's response in my feet. Of course, this will all be interpreted by the doctor too. One thing I didn't understand - the lab actually dunked my hands and feet in steaming hot water for the testing of each individual finger pulse? I keep reading about testing in cold water and am a little perplexed about this, thinking my hands may show a more exaggerated response with the cold. My hands afterwards, however, became very very red and slightly burn-y feeling (I'm wondering if it's an overresponse to the hot water, aka erythromyalgia) and I will bring that up at my follow-up with the vascular doctor. Have any of you had Raynaud's testing done in very hot water, as opposed to cold?



#6 Joelf

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Posted 28 August 2013 - 10:02 AM

Hi Jess,

 

I must admit I've never had Raynaud's testing done with hot (or come to that, cold) water. I have had a nailfold capillaroscopy done, which involved painting the base of my nails with a liquid and then putting them under this rather natty little machine like a microscope. 

 

I'm sorry; it must have been very uncomfortable to have your hands and feet immersed in hot water like that!


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#7 Amanda Thorpe

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Posted 28 August 2013 - 10:53 AM

Sorry Jess, have only had the thermography which involves cold water!


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#8 msjess

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Posted 28 August 2013 - 11:25 AM

Yes, the testing was pretty uncomfortable, especially with the hands at first. It was steaming hot... seriously, almost boiling. I didn't understand but the tech said they don't do the cold version of the test there. :-/



#9 msjess

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Posted 11 September 2013 - 12:38 PM

I finally had follow-up with vascular to hear the results and - surprise - I have Raynaud's/vasospastic disorder in hands and feet. I asked them to forward those results on to my rheumatologist, and they also agreed to do another ultrasound of my leg/phlebitis to check for any DVTs. I have had difficulty breathing lately and was concerned it may be related to pulmonary embolism. No DVT at all, at least not in that leg. I am having thyroid difficulties at this moment - very hypothroid with TSH at 8.34 - and am having nausea, palpitations/chest pains, headaches, and low grade fever. Hands still very much hurt - all joints are involved in both hands - they are red and are very stiff in the morning, but if I overuse them it turns into an achiness.



#10 Joelf

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Posted 12 September 2013 - 11:55 AM

Hi Jess,

 

I'm sorry to hear that you've been diagnosed with Raynaud's and also that you're still having such unpleasant symptoms to deal with.

 

Hopefully your rheumatologist will be eventually be able to correlate all the details of the other tests you've had and a clearer picture will emerge when you have your appointment in October.

 

Kind regards,


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#11 Amanda Thorpe

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Posted 15 September 2013 - 10:17 PM

Hello Jess

 

Well at least with a Raynaud's diagnosis you can legitimately try some of the many treatments available, if you haven't already. Have a look at our Video page as there are 3 about Raynaud's and another one pending.

 

Take care.


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#12 Shelley Ensz

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Posted 16 September 2013 - 09:41 AM

Hi Jess,

 

I'm sorry you have Raynaud's but very glad that you finally got it officially diagnosed!  :emoticons-clap:

 

With your thyroid problems, have they tested you for thyroid antibodies yet?  Autoimmune thyroid disease is also pretty common in scleroderma. I don't know why but it took years for my doctors to order the thyroid antibody panel, even though I was hypothyroid.  So it might be something you have to specifically ask for, if you haven't already.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

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