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Went to a Neurologist at Wayne State Univ.

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#1 luvbnmom3


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Posted 30 August 2008 - 01:21 AM

Hi all!

After that last appt. I had with the rheumatologist, I really didn't want to go to my appt. that was previously scheduled by my Neurologist. I just thought that if a rheumatologist that is a member of the American College of Rheumatology is going to say what he said, then why would a Neuro at a university be any different you know?

Anyway, I took my best friend (haha...as my kids would say) with me to Wayne State Uni. and we saw a Neurologist there who actually LISTENED! It was the strangest thing...haha. She checked me over & ran several tests, she wanted to rerun all the tests I had done at the first Rheumatologist appt. I had 2 years ago (end of June). She asked me what the rheumatologist said in regards to the Esopho. motility dysfunction & the radiologist saying crest, when I told her he said that my skin looks just fine right now so not likely crest; she just shook her head no & looked up at the 2 interns that were with her & said, "that's textbook, not all patients present the same."

She said something connective tissue is going on, we might not have a name for it right now, and that she has a collegue who has Rheumatoid Arthritis and her labs were always negative until 12 years into it. Then she looks up at the interns again witha can you believe it! face & says, "So she was sero-negative for 12 years!" She was really interested in my RF being elevated (even though only slightly)... mentioning it numerous times. She pointed out livedo reticularis on my arms & legs, is running tests I've never had before.... yada yada yada.

At any rate, it was GREAT (understatement) to be listened to and have someone validate that what's going on isn't normal or all in my head, especially with a witness...lol. She said it'll take a few weeks to get everything back and that if I get any new symtoms or have any questions or want to see her again to feel free to call her & she gave me her business card. Wow. She never mentioned fibromyalgia either as a possibility.

OH... I was seeing the Neuro because of all the muscle weekness, twitching, spasms, cramps, and the reaction to the Adderall which she said would only be the case with Protinix if any electrolites were low at the time....which they were.

#2 Nina


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Posted 30 August 2008 - 03:20 AM

Luv ~ How wonderful that someone listened to you. I think that may be the single gratest thing in the world when you are in our shoes. So many of my family/friends/doctors ~ well, just tons of people look at me like I'm nuts. Even now that I tell them I have Sclero. they just say, "what's that?" At any rate, so happy to hear that you found someone that makes you feel "normal." (so to speak)...
I have an appointment with a neuro. in October ~ right now that seems like ao far away, but I know the time will fly.
Thanks for posting and letting us know how your appointment went.
Hang in there, when the tests come back, you'll know somethingl more.
Much love,
Nina (DE)

#3 JJ-Knitter


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Posted 31 August 2008 - 02:16 AM

Hi love,

So the rheumatologist has never heard of systemic scleroderma sine scleroderma??

My skin looks fine, always has, and the only elevated blood work ever was high ANA with nucleolar pattern. The first rheumatologist I saw said the same thing yours did. Less than 2 years later, after a full work up elsewhere they said I had "SSc sine Sc", ILD, PH, significant GI problems, and fibromyalgia. Oh yeah, also teleangectasias, livedo on the legs, and nailfold capillary dropout.

You might want to ask about SSc sine scleroderma when your great neurologist refers you to a more open-minded rheumatologist who is particularly interested in sclero. wink.gif

Lots of luck, best wishes, and let us all know how you get on!


#4 Sweet


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Posted 31 August 2008 - 10:17 AM

How refreshing, and what a concept huh? to be listened to by the actual doctor that you are paying to take care of you? Yippee!!! I always love to hear there are still compassionate opened minded doctors out there! I look forward to hearing about your lab results.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#5 smac0719


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Posted 31 August 2008 - 01:12 PM

This is really great news love! Hopefully this will be a start in the right track. Maybe she even knows a Rhuemo to refer you to. It's amazing how these doctors. network with each other. Keep us posted.
I may have Scleroderma, but Scleroderma doesn't have me!

#6 Peggy


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Posted 01 September 2008 - 04:23 AM

I am so glad you had such a good appointment. It was only because of a great neurologist that I was finally able to get diagnosed. He too actually listened after a year of going from doctor to doctor. They must be great puzzle solvers as he said I was a puzzle and he wasn't going to give up until we knew what was going on. Again, I am so happy for you and now you are on your way to getting a difinitive diagnosis. Keep us posted on what you find out.

Warm hugs,


#7 canon


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Posted 01 September 2008 - 05:55 AM

Hear you luvbnmom3,

The treatment we recieve from unknowing people can be quite harsh. It is ten fold harsh coming from the medical profession. That has a sting that last for a long time. Makes you want to stay away from any of them. We can't stay away because we hurt and see things happening. It is nice to find caring doctors and it sounds like the neurologist will help you along.

Wishing you speedy results,

A happy heart is good medicine.

#8 Snowbird


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Posted 01 September 2008 - 09:51 AM

Hey luvbnmom3

So glad to hear you finally had a good appointment....you must be soooo relieved at finally finding someone to help! I'm glad for you. Keep us posted on your results.
Sending good wishes your way!