Confused and relieved all in one...
Posted 31 July 2008 - 04:17 AM
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.
Posted 31 July 2008 - 05:22 AM
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.
Posted 31 July 2008 - 05:35 AM
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...
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.
Posted 31 July 2008 - 05:37 AM
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.
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host
International Scleroderma Network (ISN)
Posted 31 July 2008 - 05:40 AM
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!
Posted 31 July 2008 - 08:17 AM
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?
Posted 31 July 2008 - 04:26 PM
Get that second opinion, it can't hurt anything.
Posted 31 July 2008 - 05:16 PM
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! HAha... you know what I mean...
Posted 02 August 2008 - 04:35 PM
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.
Posted 03 August 2008 - 04:16 AM
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....
Posted 03 August 2008 - 05:08 AM
Has some people have already said I would get another opinion if at all possible.
Posted 03 August 2008 - 05:37 AM
have a family day!
Posted 04 August 2008 - 03:21 AM
Posted 04 August 2008 - 04:08 AM
Don't give up, and be your own advocate. We know our bodies better than anyone else. Good luck and please keep us posted.
Posted 04 August 2008 - 03:16 PM
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...
Posted 06 August 2008 - 07:10 AM
Posted 06 August 2008 - 08:31 PM
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.
Chocolate, It isn't just for breakfast anymore!
Posted 07 August 2008 - 05:42 AM
Posted 08 August 2008 - 02:42 AM
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.