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Biomarker for Diffuse Scleroderma skin has been discovered!


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Confused and relieved all in one...


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#1 luvbnmom3

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Posted 31 July 2008 - 04:17 AM

I can't recall if I mentioned, but I had a barium swallow & the radiologist wrote on it "refer to Rheumatologist/CREST" and I don't remember what his findings were. Anyways, I brought pictures of my skin with me & The rheumatologist refused to acknowledge that my skin was getting tight on my hands... he insisted that if I hold my hand just so I can probably get it to do that & that what is really going on is that sometimes it feels tight, but it isn't. It goes without saying that he's dead wrong about me being able to "fabricate" tight skin on my hands, surely I would have been able to produce the same appearance "on command" in his office.

I asked, "Do the pictures look like Scleroderma, he said, "well, like I said, you could hold your hand just so...." <_<

Can I post a link to pictures so that y'all can see what he is disregarding? You are the experts, I want honest input from you know?

SO... here is my dilema:
1) He says my hands look fine right now (and they did look just fine), so does that mean that as the skin gets tighter, there aren't days where it is more obvious than others, yet at the same time it is slowly getting permanantly tighter? So the "worse" days are worse than they used to be.... like it used to be just over my knuckles when it would get tight (1 year ago) now it is from the tips of my fingers, down over my wrist.

2) I KNOW that my face is doing the same as my hands, when I cried, hard, a little while ago, my cheeks were too stiff to let my mouth feel like.... I don't know how to explain it, but I know my skin is stiffer... it isn't hard & shiney, but does Ssc go from normal skin to hard & shiney overnight or is it a process?

3) I want SO BAD to believe him, I feel like had he said, "Yeah, your skin does look pretty taut in those pictures, I'm not sure why they're doing that but in Scleroderma, once they start looking that tight, they stay looking that tight & get hard... something like that, but no, he completely dismissed that the skin was physically tight...said I'm only feeling it.

Do I just walk away from this? He is a member of the American College of Rheumatology so he is supposed to know what he's talking about right? He said, "Plus your ANA was negative so I don't feel that the esophageal "mobility" is related. You have Fibromyalgia."

He then agreed that I have ZERO of the pain/pressure points but since I did on the first visit (2 years ago) that it must be Fibro. I haven't had Relafen for 14 months & still havn't gotten the pain like that back.

#2 Peggy

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Posted 31 July 2008 - 05:22 AM

Is there a part of your skin that has been affected that they could do a biopsy on? That's what my rheumatologist doctor did and it confirmed sclero, along with the blood work. It sounds to me like you may need a second opinion and that's what I would do until you are satisfied that you have all of your answers. It took me a year of going from doctor to doctor. Some of the appointments were so frustrating as they looked at me like it was all in my head but I knew something was going on and didn't give it up even though it would have been much easier to do that. It was so hard on my husband and when I finally got my answer it was at the first appointment that he wasn't with me. He had run out of vacation days to take me to the appointment as he was with me for all of the others. To get this devastating news and be by myself was horrible. That same day when at 11:00 am I was told I had sclero and had maybe 5-10 years to live I had a 1:30 apt with the oncologist who confirmed that they were going to be watching for lymphoma to present itself and I would have to be tested and seen every 6 months to catch it. Needless to say it wasn't a good time.

So please follow your heart. If you aren't satisfied then forge ahead until you are. You are the patient and you call the shots. You do what you think is best for "you" and you need to be listened to and taken seriously if there is something going on.

Good luck and please let us know how you are doing.

Warm hugs,

Peggy

#3 JJ-Knitter

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Posted 31 July 2008 - 05:35 AM

Dear love,

I'll bet if you ran a poll with all of us who visit/post here, you'd find we've all had at least one rheumatologist who didn't diagnose sclero. I sure did. His plan after the consult and blood work was "reassure re the high ANA".

That rheumatologist was also Board certified. I suppose rheumatology is such an enormously broad field that some tolerance for a doctor's misguided skepticism about 'self-diagnosed sclero' might be in order (but I didn't have much!).

Three years less a month later, I was diagnosed with: systemic sclerosis sine scleroderma, interstitial lung disease, pulmonary hypertension, fairly severe GI involvement, Raynaud's, idiopathic metabolic bone disease, etc. Yikes!

In the meantime I was misdiagnosed with pneumonia (twice), asthma, fibromyalgia, post traumatic stress disorder, and the list went on. Most of us end up questioning our own sanity... B)

I was lucky I truly felt something serious was going on and persevered in seeking a correct diagnosis. I was also extremely lucky my medical insurance didn't require a referral and I was able to have a consult at a research institute that deals a great deal with autoimmune diseases.

Hang in there. Sometimes you just have to wait until more symptoms manifest and sometimes it's just a matter of finding the right doctor. ;)

#4 jefa

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Posted 31 July 2008 - 05:37 AM

I feel for you, having had similar discussions with various rheumatologists, but in answer to your question, we are NOT experts here and are in no position to give you a diagnosis based on a picture. The clinical evidence, in other words what he sees while examining the appearance of your skin first hand, is worth more to him in terms of diagnosis than a picture. Keep in mind that tightness can be from swelling rather than skin fibrosis.

Yes, it would be nice if they would talk to us in the way you describe in your point number 3. We can always dream, can't we? I have given up trying to present a diagnosis to my doctors. Instead, I discuss symptoms only and try to work with them to come up with an appropriate treatment plan. As long as you do your research, you can question them intelligently as you did regarding the fibromyalgia. Are you being treated for all of your symptoms?

If you are not happy with his opinion, perhaps you should find another rheumatologist, preferably with experience in scleroderma.
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#5 Sweet

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Posted 31 July 2008 - 05:40 AM

In my humble opinion he's being too cut and dry about this. I would seek another opinion. Just because he belongs to an association of sorts, doesn't mean he's good. Anyone can pay dues.

You know your body better than anyone and I would listen to what it's telling you. Seek another opinion.

Hang in there, don't give up!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#6 RememberingToSmile

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Posted 31 July 2008 - 08:17 AM

I am sorry you a facing this frustration - scleroderma diagnosis or not!

I know doctors are human and sometimes not natural communicators.... But you need to feel comfortable and confident with your rheumatologist (any doctor) to be able to trust his care. My first rheumatologist was very taciturn and boarderline rude - but he was obviously smart. I felt he did not over-react at first, but then was quick to act aggressively once the symptoms matured. I also had a negative ANA at the start, so I don't fault him his watch and wait stance in the beginning. He did have me back regularly, though, to catch additional developments as early as possible.

I am curious - have you been seeing the same rheumatologist since the earlier fibromyalgia diagnosis? Does the doctor want to watch you closely over the coming year to see if any additional symptoms appear?

-RTS

#7 Nina

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Posted 31 July 2008 - 04:26 PM

I think the most important thing you could do at this point is have another opinion. I was at the point where I had lost all faith in ALL doctors. I have been ill for more than seven years and not one of my doctors connected all the different symptoms. In hindsight I think keeping a journal is a great idea, write down all you symptoms everyday. I think being our own advocate is important, we have to educate ourselves and learn to ask questions. It's all a little overwhelming, but these days with the health care system the way it is ~ well, we need to be assertive.
Get that second opinion, it can't hurt anything.
Much love,
Nina (DE)

#8 luvbnmom3

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Posted 31 July 2008 - 05:16 PM

Thank you for your support. Same rheumatologist as before, he did not say to come back, just that he'd send my doctor his recommendations. I just can NOT believe he says Fibromyalgia! The only pain is from the muscles spastic stuff (which was a side affect of the overdose of Adderall) & joint pain when my skin is taut... there is occasional pain but more nuisance & not requiring pain relief. The only tiredness also was from the overdose of Adderall & went away after stopping adderall.

I definitely do not want, nor would ask for, a diagnosis from someone other than a physician, just opinions... I mean, I don't need opinions on pics I guess, since I know what is there, but I just meant so you could all see what he refused to acknowledge.

I just need to know from that doctor; if he thinks what he saw in the pictures was a "performance for the camera" so to speak, then I for sure need a second opinion, if he believes my pics to be real and definitely not sclero is his answer, I can trust him.

Your support means so much, this does really stink. I want someone else to deal with this & think about it... I don't want to play anymore! :P HAha... you know what I mean...

#9 nan

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Posted 02 August 2008 - 04:35 PM

Hi,
I have CREST, but I don't have the skin tightening. You just need two of the letters to get a diagnosis of scleroderma. I have calcinosis, Raynaud's, esophageal issues, and telangiectasias. My ANA was positive one time and then negative another. The doctor that diagnosed me said she didn't care what the bloodwork showed, she was diagnosing me with CREST. I went to Johns Hopkins for my diagnosis.
I think you should try another rheumatologist. I am so sorry that you are having to deal with all of this.
Take care,
Nan

#10 Snowbird

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Posted 03 August 2008 - 04:16 AM

Hi there

I would get another opinion too. I have Fibro...and joint pain is not consistent with fibro (not a symptom of it at all)...in my case, my joint pain is my autoimmune....
Sending good wishes your way!

#11 Buttons

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Posted 03 August 2008 - 05:08 AM

I also have FM but my rheumatologist said that my joint pains are down to Raynauds. Has anyone else been told that? I assumed it was the SSc but then the Raynaud's is part of it.
Has some people have already said I would get another opinion if at all possible.

#12 mutsy67

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Posted 03 August 2008 - 05:37 AM

I think we all know how you feel. If you can't get a doctor (who gets PAID) to care - then who? At least that's how I've felt at times. I know I've left doctors offices in tears of frustration. Why do they have to SEE my pain to believe me? I'm sorry you're going through this but the previous posts have offered some great advice and I can't add anything more - just know that we are here to provide not only a shoulder but also HOPE. Hang in there and don't give up - your family is worth your best effort here. Sometimes I have to bolster myself by asking - if this were my son would I give up just because of a crummy doctor? Of course not, and you're worth to your children is Great - carry on!

have a family day!
Shari
Shari (AKA Mutsy)

#13 Gidget

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Posted 04 August 2008 - 03:21 AM

Trust your instincts. You obviously know there is something wrong with your body. Keep searching for the answers. Talk to another rheumatologist that is either a sclero or lupus expert. Good Luck. Gidget

#14 Karenlee

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Posted 04 August 2008 - 04:08 AM

I agree with what everyone else has said about not settling until you are satisfied with your doctor. I was lucky to find a great Rhumetologist on the first try, but my dermatologist was a whole other story. He gave me cream for exzema (??) and told me to come back in a month. I never went back because I was completely uncomfortable with him.

Don't give up, and be your own advocate. We know our bodies better than anyone else. Good luck and please keep us posted.

Karen

#15 luvbnmom3

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Posted 04 August 2008 - 03:16 PM

B) Thank you so much for your comments. I have never wanted a cigarett so bad...haha. I have an appt. with a Neurologist at Wayne State (because of all the muscle stuff & my Neuro is coming up empty other than me discovering the Adderall change) & I don't even want to go because I feel like if I spend money on gas & child care & the appt. & he finds nothing that my husband is going to write my sanity off for sure and I swear... I am so ready to just lay down & let whatever it is that wants my body have at it because I feel like it can't be worse than having a single person talk to you like you're a hypochondriac, let alone your own husband. He won't even discuss with me my appt. with the rheumatologist!!!

It's that whole "moving target" of symptoms thing. Anyways. Thank you , thank you, thank you for replying, every single reply is a little piece of peace for me... :rolleyes:

#16 CraigR

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Posted 06 August 2008 - 07:10 AM

I didn't see (or maybe just missed...) whether or not you had a panel test done that checks for the various autoantibodies for sclero, lupus, Sjogren's. etc. This sort of test can be very helpful for diagnosis. Your difficulty with your doctor reminds me of an absurd (but prophetic) thing my father used to say: "Never forget that 50% of all doctors graduated in the lower half of their class". Seems like you need to find someone in the upper 50%?

Craig

#17 smurfette

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Posted 06 August 2008 - 08:31 PM

Dear love,
I am so sorry your experience thus far has been so awful. It is very clear that you need to see a rheumatologist that has a strong background in scler and other autoimmune diseases. You have been dealing with a doctor with a lack of bedside manner and it seems, without much expertise in autoimmune diseases as well.

I am on my second rheumatologist. The first was top doctor in a teaching hosp. and every time I saw him he was training a future doctor. He was very quick to offer a new drug for any complaint --too tired? He offered meds for narcoleptics. Can't sleep? Try sleeping pills. I never filled any scripts because I did not want to spend my entire life medicated - coming down or going up. He tested every two years and spent a lot of my office time on the phone with other doctors or patients.

My current doctor is younger - not top doctor, listens to me, is more vigorously testing and watching my disease and does not just push a script at me unless it is to deal with a real problem.

I have fibro and it is very different from Scler. which I also have. I do not have any of the skin thickening - I do have Raynaud's. You may not have any of the outward manifestations of the disease and still have the disease. You are not the one who should have to plead your case. It is the doctor's job to diagnose you! He is supposed to look at the symptoms you have. order the appropriate tests and make an informed judgment as to what disease or diseases you have. He is supposed to have a flexible enough mind to allow for a change in diagnosis or an additional diagnosis if it is indicated. If he is not capable of seeing that you may actually have more than one disease at one time then perhaps that is just another reason to seek a second opinion.

If you can get a proper diagnosis you can get a treatment plan. You will also feel a sense of vindication - well deserved. You will start to feel better and in more control of your life. I hope that you can get things sorted out soon and that you can feel better! It is not fair that some person with initials after his name is keeping you from getting the help you need to feel better.
Smurfette

Chocolate, It isn't just for breakfast anymore!

#18 Peggy

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Posted 07 August 2008 - 05:42 AM

Sorry to hear your husband isn't being too receptive. I think it's a "man" thing as mine seems to think that I'm someday going to magically be in remission and will be better. He doesn't realize that one disease may go into remission but I have 6 other ones to deal with too. Just to let you know that I'm here to listen to you on how your appointment went and so is everyone else. That's why we have this forum so we can share with each other. We share with people who know exactly what we are going through. So if you need to talk or vent or be with you while you smoke your imaginary cigarette - I'm here.

Warm hugs,

Peggy

#19 luvbnmom3

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Posted 08 August 2008 - 02:42 AM

Jefa - They are treating my symptoms except for the muscle issues. I have Protonix for the Esophogus stuff, Verapamil for Raynaud's/headacheless migrains (can't say it has helped the Raynaud's since it continues to get worse...but maybe it could be worse yet?) & I have had a problem with some freakish discomfort & sometimes pain in my back, right where my right kidney is... that's been slowly progressing over the last year... I used to say that when I am driving in the car/truck, it felt like there was an area 'bout the size of an apple, that felt like my clothes were bunched up or like there was some "mass" (for lack of a better word) & I always had to adjust the way I sat so it didn't irratate me & lately I've decided what it really is is that the skin on that area of my back is thick & stiff, not very maneuverable. I vaguely mentioned it to the rheumatologist he said my back looks fine.

Jensue - I have for sure heard of joint pain from Raynaud's... but I don't always have it with an attack.

Karen - One of the 3 internal med doctors I've had (I sw him when my skin was getting tight just over my knuckles a year+ ago) he said it was eczema & prescribed me a cream too... I never went back to him nor did I feel that Rx. The doctor I have now, he also siad Eczema when he saw my cracked nuckles and Rx'd some steroid cream... I filled it & tried it just to humor him, then he can't say I didn't try. But I also explained to him it only cracks over my knuckles when it has been tightening alot over a few days.

Craig - a hair over 2 years ago I had a pretty good panel of tests done; everything was negative except a slightly elevated Rheumatoid Factor and the Cardiolipin screen was positive. So they checked IgM, IgG, and IgA... IgM 5.2, IgA <4.0, & IgG "TNP" whatever that means. All normal anyways. Since then my kidney function took a nose dive from great to ok, but is still in the normal range, my WBC is always low end normal or below, & both potassium & BUN have been low end or below normal. I think they checked my ANA again a year ago & it was negative. My sister has Grave's disease and she went through the wringer for 2 years before they gifured that out with her.

I wish my doctor would take the reigns & figure stuff out for me! Twice now I've had problems with Rx's and doctors had no idea what was going on, I did research & figured it out myself & even then doctors didn't believe me at first... The Relafen... 10 months after taking it my eGFR kept declining, down from 103 (perfect for my age), I suddenly wasn't able to eat meat because it tasted horrible (like blood), they insisted the Relafen wasn't causing problems with my kidneys. I quit taking it at 10 months anyways, eGFR continued to drop until I'd been off it for 6 months. I started wanting meat again, tried it & liked it, had my eGFR checked & it had gone back up (never back to 103, but up from 69.)

THEN, I just discovered my body was having symptoms of AdderallXR overdose, even though I'd had the same dose for a couple + years. They didn't believe me that it could be the protonix since nowhere does it state those 2 drugs interact, so I called the pharmacist & explained my "theory", she agreed & said to call doctor back & tell him it was likely the case.