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Rheumatologist Appointment


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#1 ozzy69

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Posted 31 July 2008 - 11:20 AM

Hi everyone,

I just got back from my rheumatologist appointment today. My other rheumatologist sent me to her becuase my blood work came back negative, but I have really bad Raynaud's among other things. I really liked her. We did more bloodwork today and a chest x-ray. She looked at my nailbeds with gel & scope and did see adnormalities. She stated that I don't just have primary raynauds. She said I have some CTD, but wants to run more test to find out which one or if I mixed. She wrote orders to have lots of test done. I will met with her at the end of next month again to go over results. She put me on strong acid reducers and added another med for my raynauds. She is sending me for lung function test, Swallowing test, and eco. Well I guess I some answers.
Thanks
Nina

#2 Sweet

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Posted 31 July 2008 - 12:19 PM

Hi Nina,

Thanks for the update. Sounds like she is covering the bases well for you. It's so nice to actually like your doctors! I'll look forward to hearing about your results.
Warm and gentle hugs,

Pamela
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#3 Nina

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Posted 31 July 2008 - 03:57 PM

This is mind boggling...........I'm NINA
I must have missed you joining ~ where do you live? I too had an appointment today with my rehumatologist. Now I think I must be really tired or something. This is really strange.
Anyway, welcome, sorry I missed you when you joined. I live in Delaware, I'll use that when I sign my name from now on so that everybody knows the difference. Talk about fate............. I just do not believe in coinsidences (I know I spelled that wrong).
Much love,
Nina

#4 ozzy69

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Posted 01 August 2008 - 02:55 AM

Hi Nina,

I'm Nina from KY. I will change my Nina to Nina Lynn so people don't get confused. It is strange how we both had a appointment yesterday. I joined about 4 months ago but have not posted because I was not dxed with Sclero yet. Mainly just read as much info as I could. My first rheumatologist about four months ago sent me home with information on Sclero. My blood test were negative, but he felt I still had it. He sent me to a women's rheumatologist specialist yesterday, and I really liked her. I already have been dxed with Fibro, severe raynauds & IC, IBS. Whenever I would go to my primary doctor about new things going on, he would just say," oh, it's your fibro", and leave it at that. I have lots of chest pain, sore throat( at least one week of every month) joint & bone pain. She noted skin changes on my face (lack of wrinkles). She said my throat was really red and did a swab to make sure it was not strep. She did the nailfold test with the gel and found abnormalities on five fingers. With those results she did say that my ranauds was not primary and that I had a CTD. She also stated that I did have fibro, but that was not what was causing all my problems. I really liked her and will be staying with her. She ordered a: Barium Swallow, Full pulmonary funtion, complete echo, & high resolution CT. Yesterday she also did more blood work and a x-ray of my chest. Yesterday I was relieved that someone is finally putting the pieces together and I know I am not crazy. This morning I woke sad crying not knowing what to think. I am grateful that I have found this doctor even if she is 1 1/2 hours away.

Nina Lynn

#5 Nina

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Posted 01 August 2008 - 04:05 PM

Hi Nina Lynn ~~
It's hard to believe how much we have in common. I too went to a "woman" rheumatologist (I always misspell this). I liked her as well, she made me feel so much better. I've bounced around for so long, and felt CRAZY as well.
Sounds like you made a good find, stick with her and get those tests done. That's what I have to do also; lots of tests.
Thanks for the reply, and keep posting, this is a wonderful site. Wonderful peple and lots of support.
Much love,
Nina (DE)

#6 Snowbird

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Posted 02 August 2008 - 12:47 PM

Hey Nina Lynn

Glad to hear your appointment finally went well, that's great news!! :) No wonder you like her, sounds like she's thorough and going to get to the bottom of things for you! You seem to have a lot of things going on...she'll find out what is causing what, I'm sure. She's right, it's not good to just assume your fibro is causing everything....I have fibro too and joint pain and fevers are not fibro symptoms...so it's the autoimmune kicking in. My throat is sore loads of times as well...I have noticed it gets really sore whenever I am tired. My family doctor ran tests lots of times on my throat for me too but it never showed a thing....be interesting to see if your swab does? Keep us updated on your news.
Sending good wishes your way!

#7 ozzy69

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Posted 04 August 2008 - 02:17 AM

Thanks Snowbird & Nina for your responses. My sterp test came up negative. My thoat seems to get sore and red when I get runned down also. I tell my husband I am getting a cold or something but it never progresses into to more than feeling run down. It is strange. Hopefully I will get most of my test done this week.
Thanks again,
Nina Lynn

#8 janey

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Posted 04 August 2008 - 02:29 AM

Nina,
It sounds like you have found a really good doctor. Sorry that you have to drive so far to see her, but a good doctor is worth it. Hopefully she'll be accessible via the phone or email. It certainly sounds like she's headed in the right direction if she suspect a CTD. All the tests you mentioned were the one's I received upon diagnosis. I'm impressed that she was able to determine that your Raynaud's was secondary (or commonly called Raynaud's Phenomenon.) What did she give you to help relieve your Raynaud's? I hope it's working for you. In the link I provided you'll find other links that will help prevent or at least reduce the severity of an episode. About 95% of scleroderma patients have it, so there are lots of us with ideas and experience in this area. Unfortunately, it is a constant battle.

II noticed you'll be getting most of your tests this week. Please let us know how things turn out and your test results. We'll be thinking of you.

Big Hugs,
Janey Willis
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#9 ozzy69

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Posted 04 August 2008 - 05:34 AM

Hi Janey,

Thanks for your response. I am already on Plendil and she added lisinopril. She also added omeprazole to the mix because I feel sick to my stomach a lot. I have the raynauds for over 7 years now. It get s worse every year. My biggest problem is when they are not cold blue/purple, they are red/burning. I can't win. Closed in shoes restrict my feet and they go numb, and if I wear them too loose then I get tons of blisters. Open toe my feet freeze inside. At work I wear my fuzzy slippers most of the time. Lately I have been having a real problems with my arms at night. They go numb and hurt and it wakes me up all night. I am so tired in the morning. Hopefully the new med will help with that.

Thanks again
Nina Lynn

#10 luvbnmom3

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Posted 04 August 2008 - 03:31 PM

Wow...I have never heard of anyone with the same shoe problem as me, another one of those things that my doctors think is just weird... I can't wear closed shoes either for the same reason. My Raynauds is worse every year too. My rheumatologist did the nail fold test on me too & said the nail folds were abnormal but when my labs came back negative he said Fibro, actually, RF was slightly above normal & Cardiolipin screen was positive so they ordered more tests on that & they were fine. After first visit 2 years ago, he said possible occult connective tissue disease.

Anywho... that is SO awesome that you have a Rheumatologist who is being so thorough and getting you the care you need. Please keep us posted as to how things go and I hope you are feeling good!

#11 truman

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Posted 05 August 2008 - 12:35 AM

I have the same problem with shoes as well. Closed shoes cause my feet to become numb as does wearing socks. The slightest restriction of my feet and hands causes numbness. I tried buying shoes 1/2 size larger but got the blisters. I found if I bought shoes in my size, but WIDE, it would work for most of the day. Most of the time, I tried to get away with open toed shoes, but the numbness caused by the office A/C was too much. As for gloves for the hands, the restriction is too much. If really necessary, I'll use mittens but the thumb part will constantly be numb from the pressure of the material. If the office was extremely cold, maybe one or two finger tips would turn purple. In a pinch, I would cut off the finger tips of an old pair of gloves and wear them on the affected fingers so I could type without interference. I didn't care how silly it looked or the questions, it helped me get through the day. Funny how much I don't care how silly I may appear anymore; guess it comes with the territory. :P
Tru

It is what it is...........

#12 Karenlee

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Posted 05 August 2008 - 12:57 AM

I live in my sheepskin lined boots. All year round and yes even in the summer. I've had people comment or snark at me out in public as they think I'm trying to make some sort of "fashion statement". Don't care. They are soft, warm and keep my toes nice and toasty. I have to say, the best present my hubby ever gave me. (other than marrying me of course) ;)

Oh and even to bed sometimes. :D Gotta do what you gotta do.

#13 Buttons

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Posted 05 August 2008 - 01:58 AM

Karen

I so totally agree with you! These boots are so warm & comfy and I also live in them for at least 9 months of the year, I'm going to see if I can some with better soles for the winter months because of all the rain we get here in the UK.

Jensue

#14 luvbnmom3

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Posted 05 August 2008 - 03:19 AM

haha. I bought a pair of metalic silver moon boots on clearance one year for $5 & I call them my moon slippers, I bought them solely for wearing around the house to keep my feet warm. This year, I bought some of those teddy bear lined boots...WOW are they warm.

See... I hear all this stuff from you all with the exact same issues as me yet to those here with me... it HAS to be in my head.

Anyways... good day to you ALL.... I hope it is pleasant!

#15 ozzy69

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Posted 05 August 2008 - 04:06 AM

luvbnmom3,

Thanks for your reply! I had blood test done in April this year. I had negative ana and negative everything else. She decided to repeat some of the blood test and do more. She did not say what her reasoning on that was. She mentioned mixed CTD couple time. The reasoning for all my other test was: severe raynauds with possible scleroderma. She said I did have secondery raynauds. It has only been 4 months since they last took blood and I don't see them coming out different. I guess when we get the results of other test it will give us answers to whats going on. I am glad I found her, I just wish I knew what I was facing now. I hope you get answers too.

truman,

Thanks for your response! I too don't care if I look silly at work with my slipper. Everyone is used to it by now. I do take breaks and go outside in hot sun every couple of hours..

Karenlee,
Thanks for your response. I need to get some of the lined boots. I bet my feet will like those. Thanks for the tip.

Nina Lynn

#16 Peggy

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Posted 05 August 2008 - 11:27 AM

I love KarenLee that you wear those boots all year round! You go girl! That is a great fashion statement and if it works go for it!

I have posted before that the cold stores really get to me, especially this time of the year with the air conditioning. Some stores really go overboard and make it too cold that it's quite a zap to the system when you go inside. I have come to realize that I need to wear shoes that are practical for my situation and forget the fashion. If I try to wear some cute boots with my jeans my daughter will stop me and make me put some tennis shoes that are more practical. She is right when she does it or its terrible.

I am happy for you that you have such a great doctor. That's half the battle.

Warm hugs,

Peggy

#17 jefa

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Posted 05 August 2008 - 08:52 PM

I remember the first time I wore my sheepskin lined boots to the rheumatologist, he said, "Finally. Some sensible shoes!" (Not that I hadn't worn sensible shoes before - he was talking generally about all his patients.) I find the sheepskin interior helps cushion my steps and stave off Raynaud's attacks at the same time. I use soft-soled sheepskin boots around the house. I really miss the boots during the summer. I compensate by wearing really fluffy socks with sandals. My husband hates it when I wear the purple ones, but they are the most comfortable. Who needs fashion? :D
Warm wishes,
Jefa

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#18 ozzy69

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Posted 06 August 2008 - 02:16 AM

Jefa & Peggy,

Thanks for the response. Peggy, I agree about stores. Restautants are bad too. The last couple times I was so cold by the end of my meal. The cold water does not help. I wish I could drink something warm but with my IC of the bladder, water is the only thing I can drink. I decided to bring sweaters when ever we go to eat.

Jefa, I have pink & purple fuzzy socks that my boys laugh at. LOL

Thanks Nina Lynn

#19 luvbnmom3

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Posted 06 August 2008 - 04:39 AM

When you say sheep skin lined, do you mean that thick, fur like lining... you can get it in a mule? Yeah, I miss them during the summer too, they aren't too attractive with shorts, I would so wear them...hahaha. I do around the house sometimes though.

Here's an inexpensive way to get "warm" shoes.... 1 size too big with fuzzy socks.

I bought some fuzzy socks from the airport in July because my feet were cold while I was waiting for my flight... they've become my favorite fuzzy socks, but I have 4 different pairs that I wear with a pair of shoes that I bought a size too big so that I can wear fluffy socks in!