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Sweet

Just Got Back From The Rheumy And Derm Docs

30 posts in this topic

Hi Everyone,

 

Well, I traveled 9 hours yesterday going to my rheumatologist appt. and dermatologist appt. ( I live in a rural area) Anyway, lets see if I can sum this up without writing a book.

He drew blood to run more serologies ad he feels that I may be overlapping with another disease due to changes of symptoms. So, we'll see how that turns out.

He also scheduled me for a brain CT with contrast this next week due to memory and cognitive changes. I'm also scheduled for a Bone Scan next Tuesday with contrast as I had a lumbar/sacral CT come back abnormal and they want to rule out bone cancer. THEN on Jan. 5th, I have to travel 12 hours round trip to get a heart CT done to check for plaque build up and pulmonary hypertension.

 

He kept my meds as is and then in the end when I told him I was thinking about applying for SSDI, he said "Good luck you'll never get it" I was crushed. My last few visits with him haven't been the best as far as him being understanding and taking me seriously on symptoms. I routinely get the answer "Well in my practice I have a patient with a CRP of 20, so see you're isn't that bad" Even though it's high. lol I asked him if that meant he wouldn't support me in this endeavor and he said "it's not up to me, they will ask for a copy of your records and it's out of my hands" I know this is true to a point, but there are forms he needs to fill out in addition to writing a letter, and he could be supportive in his wording in both of those areas, so........hmmmmm

 

I've been seeing him for 6-7 years, I'm told he's the best, I've like him a lot until just the past 3-4 visits. I know of one other person on the sclero forums that sees him as well and loves him, so maybe it's just me. Anyway, I see him again in 4 months and I'll let you know how all of my scans and CT's turn out.

 

I saw the dermatologist again, for a 6 month follow up from a melanoma removal and I was given the thumbs up and don't have to see him for another year.

 

That's about it! Hope everyone is having a great weekend!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Pam,

 

Thanks for the update! Wow! Nine hours of travel is a long day! I am sorry your rheumatologist wasn't more supportive of your filing for disability.....it sure makes you wonder if he was just trying to prepare you because it is difficult to get or if he doesn't think you merit it. I would have felt pretty frustrated by his comments. I am glad to hear that he seems to be ordering all the right tests for you and is trying to determine whether or not there is something else going on with you. Please do keep us posted as you get your results.....and I would definitely apply for SSDI anyway!

 

Warm wishes,

Heidi

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Thanks Heidi,

 

He said that a person pretty much has to have a lot of organ involvment before they would come close to qualifying. I disagree. I'm going forward anyway. My primary care provider was very supportive of helping me.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Pamela,

DON"T LISTEN TO HIM!!!!!! I got disability and I didn't need an organ transplant. When I got disability this is what was on my application: Fibromyalgia, Raynaud's, GERD, Gastric Antral Vascular Ectasia, Sjogren's, arthritis, and degenerative joint disease. I had surgery on my right thumb and my right hand atrophied so badly that I don't have much strength in it. My primary care physician thinks that is why I got it. Who knows? I applied twice and it came through the second time with no problem. I didn't even use a lawyer or have to go before a judge. If your primary care physician knows how to word it you will have no problem. I will keep you in my thoughts because it was a very scary time when I was applying for it and very discouraging too. You will get it!!! Keep your chin up!!!!!!!!!!!!

Nan

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Hey Pam,

 

Sounds like your dr is checking you for about everything and thats a good thing I guess. Best to know and treat then not to know and get sicker I guess.

As for the SSDI, well I just applied for it because my general practitioner suggested that I do. I was on the fence with it but as soon as he said it, I did it. Hey if I get it great, if not I will try again. I know I need it. Good luck and let me know about your tests.

I will cross my fingers ( well in thought anyway) that all is healthy for you.

 

Hugs,

Patty

 

P.S. Maybe we will both get the SSDI at same time and we can have a virtual party together!


Hugs,

Patty

 

If Life hands you lemons, make lemonade.

 

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

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Hey thanks Patty,

 

If you've already applied then you're ahead of me. I am gathering information and when I feel I have enough together he wants me to make a 2 hour appointment with him to put it all together.

 

Keep me posted!!!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hey Sweet,

It really sounds like this guy is honest and strieght forward with you...that is a plus. As far as SSDI it may be harder to get where you are as opposed to other states, but keep at it, you will get it eventually. Like everything else with disease, patients is key.

 

I hope you will keep us informed and updated with the serologies and CTs.

 

Regards,


*WestCoast*

 

********

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Hi Sweet,

That is a lot to take in on one day plus the travel time... you must have been exhausted! If you feel you need the disability, then go for it! I received it and I wasn't fully diagnosed with ILD at that point. Yes, patience is key! It does seem as though your doctor is thorough with ordering tests etc.... at least he doesn't discount you and tells you there is nothing wrong. It is really tough when you don't have many options around you. Please keep us posted on your tests.

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Thanks Lisa,

 

Your post was encouraging to me. I'll keep moving forward. Oh my doctor knows my diagnosis since he gave it to me, he knows I'm sick - I just feel he see's so many people who are much sicker than me, and so it probably seems silly to him that I want to apply. But I will anyway. :)


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Pam,

Thanks for the update! Congratulations on the dermatologist appointment! Don't you love it when the doctor says see ya next year?!? Sorry to hear about the "attitude" of the rheumatologist. Maybe he was just having a bad day. I have found that my rheumatologist is very moody. Must be those male hormones. :D Let's just hope when he gets the paperwork for your SSDI, he'll have a clear head and a good attitude and provide the information that you need. We'll keep our fingers crossed for that one.

 

WOW - you do have to travel a long way! I guess you take the bad with the good. I'm sure living in a rural area provides you with a lot of relaxation and enjoyment that makes it all worth it. Hopefully your travel route isn't too congested and is an easy drive.

 

Good luck on the SSDI and all the test results. Keep us informed.

 

Big Hugs,

Janey


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi Pam,

 

First of all, I have to give you credit for making it through a 9 hour day! I would turn that into an over night trip.

 

Congrats on the dermatologist--a year's clearance is always good for a little happy dance.

 

Some of the reasons for the tests you have coming up aren't the ones we like to contemplate, so I hope you're not! I don't mean, be an ostrich, but why borrow trouble if you don't have to. If they come out clean, you've used a lot of precious energy and time you didn't need to and if they show something, you'll have the specific info on what to concentrate your info searching on. Don't mean to be giving a lecture; this is simply the "pep talk" i always give myself!

 

For your SSDI, there's really nothing you can do with a doctor who doesn't want to cooperate. My rheumatologist has been the same way. Not as blatantly as yours, she just simply doesn't keep good notes and passes it all off to her nurse. All my other doctors are good, tho. So do what you can, and really work with your cooperative doctors. I also found it helpful to go ahead and get copies of my med. records on my own (even tho it cost me $$) rather than relying on the "bureaucracy" to do it. Someone gave me that hint as a big timesaver in the process.

 

Good luck with it and do keep us up to date on your test results.

 

xoxo emmie

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Hi Pam,

 

The link I have included is from the SSDI website and give the guidelines for being considered disabled if you have scleroderma.

 

If you meet the criteria, be sure to have your doctor quote and reference the appropriate section in his evaluation and letter supporting your application. With medical notes and test results to support this as well.

 

I was just recently approved for disability, after 2 years of appeals, and all it really took was the judge looking at my records, and then consulting the book and ruling in my favor. All of 10 minutes total time in the hearing room...

 

Good luck with the battle, and don't give up! Lizzy

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Hey guys!

 

Just a quick update on some of my results. My lab work didn't show any new evolving diseases - yippee!

 

And my bone scan came back negative for cancer, big YIPPEEE!!!

 

Still awaiting results from the brain CT.

 

Just wanted to let you know.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Sweet,

 

Yipee! That is such wonderful news. I am so glad that you don't have anything ELSE to deal with. Do let us know as soon as you get the results back from your brain CT.

 

Warm wishes,

Heidi

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WhooHoo Sweet!! It's so good to hear all the good results from your tests! It's a good sign that you could remember what all those tests were. :lol:

Big, big hugs,

Janey


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi Sweet,

 

You can have cognitive problems without it being due to age or to things that would show up on a brain CT. Often, they can be due to sleep disorders, or coexisting fibromyalgia (or both). Identifying and treating sleep disorders can be very helpful; and there is an increased incidence of sleep disorders among people with scleroderma.


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.

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Dear Sweet,

 

I am so sorry about all what you have had to endore and all the up comming test you have to go threw. I can't believe how long you have to travel I bet you are so tiered by time you arrive home. Have you been having alot of memory loss since you've been dignosed? I don't understand why the doctor couldn't write his personal input about your fight against this terrible illness and how it has engulfed your life. It's not like your lying to get lots of money so you can live it up and travel and to party everynight. I hope it all turns out well for you Sweet I really do. I hope all will go well for you in the month of January so you can have a great start inthe New Year.

 

HUGGS,

 

Pauline

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Hi Pauline,

 

Thanks so much for your words. Yes, I do have memory problems, and it's getting worse. Sometimes I have a hard time comprehending some of the simplest things..... it kind of freaks me out. Thank goodness my husband knows me well enough to figure out what I'm trying to say as he has to finish a lot of my sentences. :)


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hey Sweet,

 

I'm happy to hear the last of the tests came in clear. Altho, sometimes it's frustrating...not that we want "bad" results but when we know something isn't right but nothing's showing yet, it can make us feel like we're a little 'goofy'. Kind of like when lupus takes years to be diagnosed for some folks. Anyway, I'm glad nothing horrible and serious showed up. So, take good care of yourself and maybe consider a sleep study? I know you've mentioned how difficult sleep is for you.

 

xoxo emmie

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