jenee

New Here, need some help :)

21 posts in this topic

Hi Maureen and everyone,

 

Yes, I had an ANA test along with other tests including the SCL70 antibody those were negative. I am actually reassured to hear that you had problems getting a positive ANA but did get one eventually. I know from my readings that is common, just frustrating.

 

I am sorry about your skin involvement being worse and hopes that improves. I also have Dr. Maureen Mayes book and I have found that to be very informative.

 

Janey has been a great help the rheumatologist she mentioned is actually in the same office as the one I saw. The rheumatologist I saw just seems so young.

 

I actually went to the rheumatologist on my own initiative, my primary doctor, moves pretty slowly. I told Janey I wasn't sure if that is doctor Faux Pas, going to a doctor on my own I mean. There was also a communication error, which I assumes happens, with my primary Dr which I will explain below.

 

I had called my primary dr office and spoke to someone there not sure who and left a message for the Dr. asking to her to call me about a possible referral ( I meant referral letter) to a rheumatologist since I thought this was the best thing to do and also because some rheumys do require a referral letter.

 

Anyhow, she never called back but turned out scheduled me for an appointment with a rheumatologist with UNM one who does specialize in dermatology and Internal Medicine. I had no clue she scheduled an actual appointment. I received this letter about my appointment after visiting the rheumatologist at lovelace that I had called and arrange an appointment for since she did not need a referral letter and was able to see me pretty quickly like about a week wait.

 

I did ask Janey if she has heard about this rheumatologist and I am waiting back for her reply. I am hoping she has heard of him. Anyhow, I feel it is best to keep the appointment with him since my primary did refer me to him. I don't want to offend her since I had a request and she is pretty good about listening to me and I feel that is important.

 

Umm... guys has this ever happened to you? How do I make sure communication problems like this do not occur? This to me feels like a kinda sticky situation.

 

Anyhow, the appointment with UNM rheumatologist isn't until the end of April. I hoping that the rheumatologist at UNM will get a postive ANA as well since labs do differ and they use different labs.

 

Until then I need to do some more research.

 

I am also going call the rheumatologist I saw at lovelace and ask to be switched to the rheumatologist that Janey recommended for my 6 month follow up appointment. I think that should work?

 

What do guys think?

 

Thank you so much everyone for taking the time to listen to me and for responding to my questions.

 

Sincerely,

 

Jen

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Opps, I meant HI Mary, was thinking about the sclero book.

 

Hi Nina,

 

I know what you mean about the nut comment, maybe we are being just ultra self conscious. I do know when I asked the rheumatologist some questions she seemed to looking at me like I was growing horns on my head, but was polite and helpful as I suppose she could be.

 

When I called Shelley the first thing I believe she said, was sclero, and autoimmune diseases in general can take up to an average of 6 years to be diagnosed. That can be a hard pill to swallow.

 

I believe the hardest thing for me is learning to be patient and probably for others as well.

 

Anyhow, thanks for the hi and sharing part of your story.

 

Sincerely,

 

Jen

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Hi Gretalclyde,

 

I ended up making most of my specialist appointments without asking my general practitioner. Some of them are OK with it, some aren't. My insurance does not require referrals, so I figured out what the ****~ I felt I needed to see doctors that I could work with and whose opinion I felt I could trust.

 

My general practitioner had convinced himself that I had asthma, when none of the tests he ordered indicated that was the case. A nurse practitioner in the practice wanted to set me up with an appointment with a pulmonologist, but his specialty was . . . asthma. I said no, but she made the appointment anyway and sent my medical records without my agreement. Sigh~ Control issues, here.

 

Once I went to the 'Center of Excellence' that diagnosed me, I did take their recommendations on all the other specialists I have ended up needing. They knew who worked well with them and who knew more about sclero as it applied to their particular specialities.

 

And yes, I guess it was close to 6 years from initial symptoms to diagnosis. That was the hardest part. You'll hear over and over what a relief it is to finally get the diagnosis. When I saw my rheumatologist the day I got the diagnosis, I said "before you tell me, look at this." and handed him a slip of paper on which I'd written "SSc sine Sc with PH and ILD". He said "yes, I'm sorry" and I scared him half out of his socks by bursting out laughing. Man, what a major relief!

 

So hang in there, take care of yourself, and remember if your general practitioner gives you any hassle over making your own decisions, he's 'hired help'. We listen to our plumber's recommendations, but we make our own decisions!

 

Best wishes and warm hugs.

 

Jeannie


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Jeannie, you crack me up...hired help...love it. :lol: Isn't it such a shame that we get so desperate for a diagnosis that any diagnosis is better than no diagnosis. I knew what sclreo looked like and did to a person when the rheumatologist gave me the diagnosis nevertheless I was relieved to have a name for my illness. Naming it means it can be contented with, treated, investigated and lived with.

 

Gretalclyde I hope you soon get a firm diagnosis, with sclero a diagnosis should be base on symptoms as well as blood work and tests rather than any one in isolation. You can have SSc and a negative ANA as I do and did at diagnosis.

 

When it comes to dealing with the doctors remember you're acting in your own best interest, if that's a doctoring faux pas too bad...:angry:...with some doctors you'd be better off with a plummer! :lol:

 

Take care and keep going.

 

Amanda


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Guys, Jeanie and ohboy,

 

Thank you guys so much for reminding me that I hire the doctors, I needed that! Jeannie, the plumber bit to me was funny :)

 

I can't believe they said you had asthma when none of the signs pointed to asthma but glad it was figured out. I wish we had a center of excellence here.

 

Ohboy, thank you for sharing your story of a negative ana at time of diagnosis, and yea you are right some doctors you would be better off with a plummer or the cable guy :)

 

Guys I really appreciate the advice and support you have given me here, thanks!!

 

Sincerely,

 

Jen

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Hi Jen,

 

Welcome to the Sclero Forums. I too have been away soaking up sun, but in Mexico, so sorry for the late reply. I knew the second you mentioned talking to a wonderful woman on the phone that it was Shelley. Is she not the best or what!?

 

I'm so very glad you joined us. I look forward to knowing you better.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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