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Questions to ask the Scleroderma Specialist visit Monday


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#1 kselibrary76

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Posted 24 July 2012 - 03:03 PM

I'm Karen, 53 years old.

Morphea on back
Vulvar and anal Lichen Sclerosis
IBS

of late I have had a lot of muscle pain and tendon pain, burping, hiccups and fatigue, toss in newly discovered fatty liver, and off to the doctor I go for bloodwork.

Came back that I was VitD low and ANA 1:640 centromere pattern.

My physician became concerned, which in turn freaked me out. I'm still freaked out!

He sent me for several more tests, one was an ultrasound of my abdomen. I had a lot of abdomenal ache. Turns out (we think more than likely) caused by fatty liver. I am now no carb'ing it and dieting.

Those ultrasounds showed the organs all good and with no issues.

Tomorrow I go for an EGD to try to find out what's going on with the burping and hiccups.

I was scheduled with a Rheumatologist in the area for the 10th, but YAY !!!! The Sclero Clinic just phoned and put me in a cancellation spot.

I go Monday. :D

I am told this Sclero doctor is amazing and calming (yay again) and so very helpful.

I would like you...those who have been in the trenches to help me come up with my list of things I would like to know from her!

I have some of my own questions, but what specifically should I be asking?

Any and all help would be truly appreciated!

Karen

#2 Shelley Ensz

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Posted 24 July 2012 - 06:04 PM

Hi Karen,

On our main site, on the Conditions Associated with Morphea page, we have posted the information that 2% of morphea patients test positive for anticentromere, and that those patients are at risk for eventually developing systemic scleroderma. So if I were you, I'd print out that page and the related abstract, and bring it to my visit as a main discussion point.

The fact that you don't seem to have any symptoms of systemic now is wonderful. You could probably consider most of your baseline tests done, so if anything ever changes, they will be able to pinpoint it quickly.

Hopefully you will get a clean bill of health, except for what has already been diagnosed. Around here, we all know that it's a lot easier said than done to "not worry" about developing systemic. Statistically, you should "worry" about other more common diseases like heart disease, cancer and diabetes as they are more likely to get all of us, in the end, just because they are so much more common. Also bear in mind that "at risk" is not the same as "definitely will".

I'm going to give you a great big hug, and hope that things all turn out okay for you. We'll be thinking of you and be sure to let us know how your visit goes, okay?

:emoticons-group-hug:
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.

#3 kselibrary76

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Posted 26 July 2012 - 09:58 AM

Thanks Shelley,

The test yesterday went well. The G.I. saw no scarring, no thickening, no hardening. He did some biopsies of my esophagus anyway, as well as my stomach and small intestine, just in case there were underlying issues.

He feels I have gastritis and perhaps a good case of h. pylori, which I've had in the past. He didn't feel I had any sclero damage. That, with the results of my abdomenal scans, make me feel a bit more...able to face whatever.

The doctors all feel there is some sort of connective tissue thing going on. My shins were radiating pain all last night (no sleep), my forearms and elbows are right now. It feels maybe like tendonitis?

I have major fatigue too. The girl who used to run herself ragged and fall in bed at 11 to get up at 5:30 is no more. *ugh* With fatty liver though...that could be an issue too...so I think Shelley, this appointment with the rheumatologist at the sclero clinic will likely bring more tests as they try to ferret out what in the world is going on.

#4 Joelf

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Posted 26 July 2012 - 10:48 AM

Hi Karen,

I'm very pleased that your test yesterday went well and that you're feeling a little better.

I've included links to a recent thread we've had on Tendonitis which I hope you'll find interesting and also a link to our medical page on Fatigue which also includes one of Amanda's super video's on the subject.

Please do let us know how you get on with your appointment on Monday.

Kind regards,

Jo Frowde
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#5 Shelley Ensz

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Posted 26 July 2012 - 04:34 PM

Hi Karen,

I'm glad your GI appointment went well. I hope your scleroderma expert appointment is productive, in that you get some answers, of some sort.

:emoticons-group-hug:
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.

#6 Amanda Thorpe

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Posted 27 July 2012 - 04:49 AM

Hello Karen

Welcome and I am glad the visit went well. Yeah most of us go from dynamic to done in! Fatigue is a common complaint ranging from irritating to debilitating, I have the former unfortunately!

At least you're getting good care, appropriate tests and know you'll get the right treatment.

I hope things progress well for you and take care.
Amanda Thorpe
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#7 kselibrary76

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Posted 27 July 2012 - 09:09 AM

Thank you Shelley and Amanda.

Thank you too for the links.

I just got called with the biopsy results of my esophogeal, stomach and small intestine biopsies.

No inflammation of abnormal cells found in the esophagus. Nothing abnormal at all except for a slight hiatal hernia.

Inflammation in belly and small intestine was shown to be of normal pathology...minor inflammation. No abnormal cells were found.

I need to know what is causing this all over body pain. It is frightening in that it remains as it has. I freak out about a lot of things (admitted control freak here). My father and grandfather died of cirrhosis and I know it causes you to itch, and to have pain in your legs. This pain is leg predominant with NO redness or edema. I do have fatty liver but have made great strides in getting rid of that. Diet, exercise...doc says it is totally reversible. I will also admit I itch more when I freak out and think about it too much. My immunodermatologist feels it is due to the morphea. Who knows.

I am looking forward to Monday's appointment. I need some answers.

Do you guys know how much I appreciate you and your input. It is invaluable.

So far....so good.

Big hugs all around,

Karen

#8 Amanda Thorpe

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Posted 28 July 2012 - 10:17 AM

Hello Karen

Well those or good results, no damage done is a good thing for sure!

I also have morphea, massive patches of it on my thighs, over 10 between both and about as many developing on my calves and they do itch. I also find them a bit tender to the touch. I am going to try and download some pictures of the morphea and the ulcerated bullous morphea.

The best defence against itching is moisturising, constantly! When I first had systemic sclerosis, developed morphea afterwards everyone went on and on about moisturising and I thought it unimportant but let me tell you not anymore! It does make a difference and with areas of my skin now breaking down I know how important it is to try and keep them soft and supple...as you can with scleroderma!

Take care and I hope you have more good news to share.
Amanda Thorpe
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#9 Shelley Ensz

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Posted 30 July 2012 - 09:24 AM

Hi Karen,

Is it Monday yet? Do you have any answers?

:emoticons-group-hug:
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.

#10 kselibrary76

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Posted 01 August 2012 - 11:28 AM

Well, here we go.

I just read the 'dismissed' thread and feel a little at sea myself.

I went to see the Sclero specialist on Monday.

With me I took a list of things:
Medical history
Family medical history
Current concerns
Fears
Questions
Jim (fiance and sweetheart of a man)

The doctor came in and talked to me about why I was there. She looked at my abdominal ultrasound results, blood results (question for you all...is a hiatal hernia in anyway related to what you guys are saying is GERD? My endoscopy showed small hiatal hernia and inflammation in the stomach and small intestine indicative of gastritis - no abnormal cells were found).

She talked to me of my burping (lots of it), and says that is part of the gastritis, keep on the pepcid and to see the gastro.

She looked at my hands for a long time, putting oil on the cuticles and looking with one of those lighted things they look very closely into your eyes with. She said they looked perfect. She did some pinching of the skin just above the middle knuckle of my finger, palms, fingertips. She looked between my fingers. Had me squeeze her hand as hard as I could. Also checked muscles in legs and arms for strength.

She pulled my lip down and the upper one up. I am 53, non-smoker, but have some very nice lines in my upper lip which has always been thin. She asked me if I had always had that small of an upper lip. I said yes (freaking myself out afterward to the point of getting old photos out to reaffirm that in my own noggin.) She asked me if I felt the skin tightening around my mouth, my answer "no."

She informed me that she didn't think I had sclero. She didn't say I didn't I noticed, but that she didn't think I did.

I asked about the Raynauds and she said if everyone who had Raynauds had sclero her practice would runneth over.

I asked about belly discomfort and bone/mucle pain. She kind of nonchalantly said the belly is due to the gastritis and the muscle/bone pain is likely a combination of very low Vit D and some sort of thing going on with a thyroid and bone issue. Referred me to an endocrinology bone specialist (who knew they even existed) who I was told could see me in DECEMBER! I have since been moved up (if you can call it that) to October.

When I asked about the centromere pattern and the ana of 1:640 she said the following (paraphrased):

That basically the 1:640 is indicative that something is going on (see endocrinologist stuff above, lol) and that the centromere pattern was read by some guy in a lab that had to come up with something...and that sometimes they get it wrong.

My thought was, let's do it again then to see if we get the same thing. She thought it was fine 'as is.'

She informed me I was likely the healthiest person she'd see all day, get to the endocrinologist, and have a good day.

She did send me for some sort of muscle bloodwork to check for inflammation there.

So I am talking to a new friend that I met on one of these sclero boards about all this...she informed me she pulled down my lip to look for telangiectasia. STUPIDLY on my part, Madam Control Freak went to the mirror, pulled down her bottom lip and sees two little marks. One red and small the size of a pin , one looks more like a canker sore but there is no pain associated with canker sores. They are further down inside my bottom lip, near where it connects to the gumline. I have very few telangiectasia, maybe 15? They've been on the trunk of my body, one on an arm, a couple on legs. She didn't see the ones on my body or look at my rosacea, which I understand is a form of telangiectasia as well.

So dear hearts...there is my story.

I feel MISERABLE. I feel nauseated a lot (she said due to the belly issue and Vit D deficiency?), I have less bone pain as I've upped my VitD to 5000 units per day, but it is still there. I have huge muscle fatigue in the (ahem) saddle bag area. I've lost 8 pounds in the past 4 weeks for the fatty liver, with a goal of 30-40 in the year.

What do you think? Shouldn't she have run another ANA or anything?

#11 Amanda Thorpe

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Posted 01 August 2012 - 03:37 PM

Hello Karen

I realise you're disappointed as you were hoping for a diagnosis of scleroderma so that you could put all your symptoms under one umbrella but it appears you can't having been told you don't have scleroderma. From what you've written the doctor said she didn't think you had scleroderma, she can't say what anyone else things only her and she thinks you don't have scleroderma. Isn't it good news that you don't have scleroderma?

Blood tests can be a red herring and for diagnostic purposes are only an indicator of anything. For example many people with blood work positive for scleroderma never develop any symptoms and then some people with blood work negative for scleroderma have scleroderma, like myself (in fact my blood work even says my rheumatoid factor is normal and scleroderma is a rheumatic disease!). This is why blood test results alone should not be used to diagnose or rule out scleroderma. See our video about diagnosis of scleroderma.

As for telangeictasia scleroderma can cause them to appear on the hands the face counting towards a diagnosis of CREST (a form of scleroderma) but as they can also appear on the trunk and extremities of healthy people, any here do not suggest scleroderma.

Raynaud's occurs in 3 to 5% of the general population; however, more than 80% of patients with Raynaud's do not have a connective tissue disease or other serious illness and you appear to be in that 80%.

I guess you could always ask for a second opinion and/or the blood tests to be done again, alternatively accept the diagnosis as it is because let's face it fatty liver, gastritis, low vitamin D, hiatus hernia, Raynaud's and possible thyroid issues are enough problems to deal with!

Take care.
Amanda Thorpe
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#12 judyt

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Posted 01 August 2012 - 05:08 PM

Hi Karen,
At the risk of being a wet blanket, I have to somewhat agree with Amanda, this thing is very hard to diagnose. It would be nice to have a neat and tidy answer about what is going on, but there are very few of us who can say that. Everybody is different and not only that, things change all the time, one year I go to the rheumatologist and I am woebegone and weary then the next year I am a box of birds who knows what will happen next - makes life interesting (not).

In some ways it doesn't really make any difference what ails us, it is a case of getting the best treatment or therapy that is available to help yourself. As has been said, you have enough to deal with just keeping up with what you have got confirmed.

I have huge muscle fatigue and I sympathise with you on that score, there doesn't seem to be anything to be done about that except to pace oneself and ask for help when the going gets too tough. I pruned roses for an hour or so each day earlier this week, then today when it was time to make beds and do the laundry I had to ask for help because I just couldn't keep going, that's life.

We are always here to listen and offer advice so keep posting,
Good luck with your aim to feel better.
Warm hugs

Judyt

#13 Joelf

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Posted 02 August 2012 - 05:52 AM

Hi Karen,

I can understand how worrying and frustrating it can be to feel as if you're in no man's land, but as the others have said, unfortunately Scleroderma is incredibly difficult to diagnose correctly, not less because it presents in so many different forms for different people. Like you, I can also be the teeniest bit of a control freak and I like to know exactly how things are, so I can understand where you're coming from. Before I was actually diagnosed with Scleroderma, I had convinced myself (through foolishly googling my symptoms) that I had Idiopathic Pulmonary Fibrosis (which is the nasty one where basically you just die! ;)) and one of my lovely consultants sat me down, looked me straight in the eye and said "You do not have IPF!!" and in fact wrote down "non specific interstitial pneumonia" (NSIP) for me and suggested I google that instead. After that I had to believe him and have never worried about it since! ;)

I think sometimes it is possible to worry over symptoms too much and it does sound as though you have enough health problems without adding possible Scleroderma to the list. I hope that you can soon feel a little happier and less worried and please do keep posting to let us know how you're faring.

:emoticons-group-hug:

Kind regards,

Jo Frowde
ISN Sclero Forums Manager
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International Scleroderma Network (ISN)


#14 kselibrary76

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Posted 02 August 2012 - 06:02 AM

Oh, I'm pleased, VERY pleased, with the no sclero diagnosis. I just thought it was a bit odd to not have any other blood tests, etc. done.

I'm on the road to discovery, as I like to think of it. I AM going to discover why I feel so bad and have so much bone pain in my extremities. We made a decision last night. The sclero specialist wanted me to see an endocrin metabolisism doctor at the clinic she is at. My appt is not until October. Well.....I did some research last night and there are literally a dozen doctors of that set in the surrounding area, that my insurance covers as well. I will keep the appointment with the one she (sclero doctor) wanted me to see, but...in the meantime, today I am calling for an appointment with one in my area. Why wait. If nothing else I can be getting the tests done I need done to feel better.

I wish you all a lovely weekend. One in which an unexpected happiness of three waits just around the corner.

Karen who will likely still come here to check on you all. :)

#15 Amanda Thorpe

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Posted 02 August 2012 - 12:33 PM

Hello Karen

Yes, please keep us posted on your diagnostic journey! We started it with you and would like to be with you at the finish line...provided you get there of course! :lol: :lol:

Take care.
Amanda Thorpe
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#16 debonair susie

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Posted 03 August 2012 - 10:01 AM

Hi Karen! It is SO great to "get to know you"! I only (just) now read your thread and the posts from other wonderful moderator ladies of our community; I am SO pleased, to date, you're receiving such great care from the doctors you have seen, thus far. They seem to be "covering all of the bases", via the tests ordered. It can be disconcerting to feel the "inconclusiveness" of a gammet of testings; however, as the others have so aptly conveyed, the journey you are on, is looking quuite good, actually! :) I, too, am happy you are doing as well as you seem to be and wish you nothing but the best, as conclusions, with regard to your health, come in.

How wonderful, that you have a great fiance'! Have you set a date? I look forward to your future posts and hope that you keep us abreat of your impending wedding plans, as well ;)


Special Hugs,

Susie Kraft
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