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A Little Update


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#1 emmie

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Posted 28 March 2007 - 05:05 PM

Hi Friends,

First of all, thanks, Heidi, for asking about me on another thread several days ago. I've been meaning to do this for several days, but I'll get too tired, too brain drained, blah blah. Anyway, I always do appreciate your interest and concern.

Second, I see a neurologist not for scleroderma issues for any of the newer members. I don't want to scare you! I have a Neuro-endocrine condition called Hashimoto's Encephalopathy. It is an autoimmune disease (of course) in which they think antibodies go after neurons in the brain. It is thought to be pretty rare. You can google it if you want to read about it. I just don't want newcomers to think the neuro visit is in relation to scleroderma.

As you know, I have had to switch all my doctors due to an insurance company change and this company isn't accepted at the university hospital where all of my old doctors were so....

First of all, I had to wait 3 months to see the neuro and rheumatologist so I figure might as well schedule them on the same day. I scheduled them 3 hours apart. It was not enough time. The neuros were so behind that I was still going to be 30 min. late by their estimation. When I called down to the rheumatologist's office, all in the same univ. hosp. clinic (but different from the old one obviously), to see if this would be okay, I was told no, I would need to reschedule. ARRGGHH.

So finally this neuro appt. gets underway. Well, these guys interrupt to much, I can tell they are really questioning the diagnosis given by my former neuro and I mean really questioning it, the fellow and the mentor dr. mumble to each other, etc etc. I'm just not real happy. Then today I found out that they ran some blood work they didn't even tell me about--some mitochondrial stuff. I know what they are looking for and it's bogus. So I'm really not happy. Not sure what I'm going to do next. My encephalopathy stuff is acting up a bit lately. We've had a lot going on and I have't been resting enough. That's when I get a *melt down*.

The neuros aren't doing anything differnet, TG, because I don't trust them. They want to wait till rheumatology sees me and see what they think. HUH???? This was long ago ruled out of rheumatology. I knew I was going to hate this starting over. I tried to be positive that it was looking at it with fresh eyes. That lasted about 60 seconds into the appointment. Actually, it was wearing real thin the longer and longer we waited in the waiting room. You all know that feeling.

So hopefully when I finally get to see the rheumatologist in April, I will like her. And she will tell the dingbat neuros, just be quiet and listen to your patient. Do whatever she tells you to do. Now that would make me happy!

xoxo emmie

#2 summer

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Posted 29 March 2007 - 12:35 AM

Hi Emmie,
You sure put a smile on my face calling the neuros dingbat doctors, it seems that you have had a trying day. I can relate how frustrating all this doctor stuff is and it sure is very tiring physically and mentally!
Hoping you have better luck with your new rheumatologist.

Kind regards
Celia

#3 Heidi

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Posted 29 March 2007 - 01:18 AM

Hi Emmie,

Thanks for the update....I have been thinking and wondering about you. I am so sorry your visit with the new neurologists was so frustrating!! And, that you had to wait to see the rheumatologist. UGH! I do so hope that your new rheumatologist is just wonderful and is able to see what is going on, listen to you, and tell the neuro "dingbats" what is what!!! I agree with you, that would be wonderful! Do let us know how that appointment goes. In the meantime, please get the rest you need and know that you are in my thoughts.

Warm wishes,
Heidi

#4 Sweet

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Posted 29 March 2007 - 09:36 AM

Oh Emmie,

I found myself getting so frustrated reading your post. As you know I'm a nurse and I've been in the industry for a very long time. I have spent years in management helping doctor. offices "restructure" the patient visit, to make it more user friendly FOR THE PATIENT NOT THE STAFF!. There is nothing more irking to me than for a doctor to not listen to their patients. And I have to tell you if it had been my staff that told you NO you couldn't be seen because you were going to be 30 minutes late due to another doctor being behind, they would not be working for me. What is wrong with these people?!?! Without the patient they wouldn't have a job! Grrrr

OK, now, I'm really sorry too that you don't have confidence in your new providers. I have had that myself. I'm getting to the point that I think there are very few out there that really listen, really care, and think they don't know it all. I truly hope that your new rheumatologist will rock your world! Then she/he can whip the other members of the team into shape.

Keep your chin up!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 debonair susie

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Posted 29 March 2007 - 12:22 PM

emmie, I sure feel the frustration you are experiencing :( . A person gets anxious when in that kind of a situation... and with the health issues you already deal with... I'm so glad you came here to vent :rolleyes:
Sweet hit the nail on the head,but some doctors can really give their profession a bad
name. With the perseverence you are demonstrating, I have every confidence you'll be heard and reign victorious also :D
Let us know, okay?

Hugs, Susie
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#6 emmie

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Posted 29 March 2007 - 04:43 PM

Thank you for the support. I needed it, especially today. The neuro in question was supposed to fax me his clinic notes and the labs from the 19th which is when I saw him. He was supposed to do this yesterday; he told me he had everything except a couple of the labs--I couldn't imagine what those were, but whatever, just get me something to send in to prove to my temporary disability police that I am not playing Barbie dolls or something. I had explained to him that I needed to supply them to my temporary disability in order to keep my retirement intact (oh, they also pay me $10, yes $10.00 a month). However, when I'm eligible to retire in 2 1/2 years I will have 25 years, so it is not something I want to get messed up.

I didn't receive any faxes yesterday. I called the clinic this morning. He was in between the hospital and clinic. He asked them to tell me that he would return my call. I had not heard from him by 3 pm. I called and they were able to put me through to him. He was not happy about me tracking him down. (too bad.) He had sent the labs, didn't I have them? No. Oh. Well, his notes were still at the transcription service. All he had were his hand written notes. Would they do? Yes. (Hmmm....yesterday everything was ready except for some labs.....)

I then let him know that he had written the rx for 30 days worth of my antidepressant incorrectly. He tried to squirm out of it, but it is written on the info I gave him. So it was also sent in to the insurance co. incorrectly for a 90 supply. All this means I'm out some more $$ due to his incompetance.

I will see him for one follow up in order to let him know we are getting a divorce. It will have been a very brief relationship. Now I have to find a new neuro to try to dance with. Dear me. The dillemas a girl with head problems has!!!

xoxo emmie

#7 Heidi

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Posted 30 March 2007 - 01:09 AM

Oh, Emmie.....

I am so sorry you are having frustration added to frustration!! I do hope you can get the paperwork today! and get the prescription straightened out. And....most importantly that you can find a new competent neuro soon. Maybe your new rheumatologist will have some ideas.

Warm wishes and soft, gentle hugs,
Heidi

#8 Sweet

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Posted 30 March 2007 - 11:43 AM

Emmie,

This is so amazing! I'm really really sorry. This has to be soooooooooo frustrating....do hang in there.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#9 emmie

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Posted 30 March 2007 - 05:06 PM

Okay, I might just have to give this guy 2 follow up appointments before I divorce him.

He not only got everything faxed yesterday, he actually called me today to make sure it was everything that I needed before the weekend!!!

Also, I did more research about the test that he did without telling me and while I'm still not happy that he didn't mention it, I did find out that it was NOT a bogus test. I stand corrected. I have to own up to my mistakes. :huh:

So, since this neuro department is one of the country's top ten according to US News and World Report, I guess Little Miss Know It All Emmie will have to cool her jets!

I must be in a *melt down*. My 26 year old daughter told me today, "you know mom how you always tell us to tell you if you start acting like a crazy, cranky old lady? Well, you are!"

So, my friends, this old lady had better start taking longer naps!!! Thanks again for being such loyal pals!

xoxo emmie

#10 Heidi

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Posted 30 March 2007 - 05:12 PM

Hi Emmie,

What a relief! I am so glad he showed such awesome follow through and not only got you everything you needed, BUT also called to make sure. And, I am glad to hear the test wasn't a bogus one. I will still be curious to hear what your new rheumatologist thinks and his/her take on this neuro doctor. Sometimes I think we are too hasty in "first opinions"....I hope that is your case and this neuro doctor turns out to be just grand and just what you need! Do let us know how your rheumatologist appointment goes.

Warm wishes,
Heidi

#11 Sweet

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Posted 31 March 2007 - 08:27 AM

Oh Emmie! Goody, things may start looking up!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#12 janey

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Posted 31 March 2007 - 10:36 AM

Emmie,
I know I'm late jumping in here, but now that I've read your second posting - I'm glad I waited. Sounds like you've had a bit of a turn around Darlin'. :huh: It's so easy getting frustrated with these doctors - I sure know that I do - as we've both learned, sometimes you have to take a breathe, do some more research and take another look. I got extremely mad at my cardiologist a few days ago, but after looking something up, I found that - OOPS - maybe he does know what he's talking about.

Hope you're having some great naps!

Big Hugs, Janey

#13 emmie

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Posted 31 March 2007 - 05:08 PM

Hey, I might make OOPS my middle name!

emmie

#14 debonair susie

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Posted 01 April 2007 - 11:58 AM

emmie, I'm glad things are working out on this front and it sounds as though you have made a wise decision :P !
As for your telling your daughter to let you know... If I were to tell my children that, I'd be in BIG TROUBLE :lol: ... especially with my daughter (34) who's even more candid than I! :P
Thanks for the giggles!
Big Hugs... from another "Old Lady" ;) ... Susie
Special Hugs,

Susie Kraft
ISN Support Specialist
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International Scleroderma Network (ISN)