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dejavu

New - Idiopathic Hypersomnia & Possible CREST

34 posts in this topic

Hi Michele,

 

I know the testing gets expensive, but if you are taking Vit. D supplements, prescribed or over the counter, your levels really should be monitored. Vitamin D toxicity isn't anything to fool with:

 

Vitamin D toxicity can cause nonspecific symptoms such as nausea, vomiting, poor appetite, constipation, weakness, and weight loss. More seriously, it can also raise blood levels of calcium, causing mental status changes such as confusion and heart rhythm abnormalities. The use of supplements of both calcium (1,000 mg/day) and vitamin D (400 IU/day) by postmenopausal women was associated with a 17% increase in the risk of kidney stones over 7 years in the Women's Health Initiative. Deposition of calcium and phosphate in the kidneys and other soft tissues can also be caused by excessive vitamin D levels. A serum 25(OH)D concentration consistently >200 ng/mL (>500 nmol/L) is considered to be potentially toxic. In an animal model, concentrations ≤400 ng/mL (≤1,000 nmol/L) were not associated with harm. National Institutes of Health Office of Dietary Supplements (ODS)


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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I have had calcium deposits removed. They were sent to a pathologist who said exactly what they were. Maybe your surgeon did this when he removed them from your shoulder?

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Hi Michele,

 

I just noticed something in your first post, "My ANA and ACA came back negative. But, I'm still convinced that I have CREST."

 

I may be wrong, I often am, as many people here will attest (sigh), but I think it is very important for us patients to keep in mind that we are not doctors. Even very experienced doctors can have difficulty diagnosing scleroderma and related diseases; sometimes it can take them years and in fact it takes an average of six years for women to be diagnosed with systemic scleroderma.

 

I tend to think we should not attempt diagnosing ourselves "for sure", especially with such a rare and difficult disease as scleroderma. The criteria for diagnosis are daunting, focusing primarily on tight skin in specific places (which does not include our baby toes, since they tend to be mostly like toughened cashews for most people) and pulmonary fibrosis (which can be seen in diagnostic imaging tests.) Many symptoms that can occur with scleroderma (in fact the vast majority of them) do not count towards the diagnostic criteria, and especially in the absence of any telltale bloodwork.

 

Now, Raynaud's and calcinosis can be fairly straightforward because they can x-ray to detect calcium deposits in the body, or look up your prior pathology reports, and they can do vascular lab testing to prove (or disprove) Raynaud's. Plus in your case they can also do genetic testing, as well. They can also do specific tests on the esophagus to detect whether any difficulty swallowing is due to scleroderma, since it can also be caused by many other things, including sheer nervousness.

 

Going to the doctor with an open mind, questioning the possibility of scleroderma, is fine. But I would caution you about going to see them feeling absolutely positive you have scleroderma, when they haven't yet said so, because that could possibly be construed as begging for trouble. If you come across as certain, instead of questioning, they would likely react rather poorly (as in, who is the doctor in this room, anyway?) Besides, it's always possible that you might have something else, or that your symptoms might go along with things that you have already been diagnosed with.

 

So, deep breath in for relaxation, deep breath out for flexibility. Try to remain calm, flexible and open-minded in your appointment tomorrow. I'm sending extra hugs, to see you on your way.

 

:emoticon-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.

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Hi Michele

 

Welcome to this friendly and informative forum.

 

I'm very sorry to hear that you have so many health issues at the moment and I do hope you are able to get some satisfactory answers from your rheumatologist.

 

I'm looking forward to reading your future posts. :)


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

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International Scleroderma Network (ISN)

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No. My surgeon did not send them to the lab. He had no idea what they were and didn't think to do it.

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Shelley,

 

I've been trying to find out what is wrong with me for 16 1/2 years. It was like trying to put a square peg in a round hole. CREST fits.

 

I have had the Raynaud's test in like 2007. It came back positive. I have an MRI of the calcium deposit in my shoulder and can get the xray.

 

My esophagus swalling problems come and go. The tests were negative. They removed a nodule from my esophagus to but didn't know what it was either.

 

I have a bump on my hand. Doctors have no clue what it is either.

 

I'm excited about my appointment. I have lots of reports, Xray and MRIs to bring with me.

 

I got no help with my idiopathic hypersomnia until I went to the doctor convinced that I had kleine levin syndrome.

 

In my experience unless I show the doctors where to look when it comes to me they are clueless and most give up quickly.

 

The only real test I have left is a sclero dna test. I didn't think to ask my doctor. This is one test I expect to come back positive.

 

Michele

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Hi Michele,

 

Welcome to the Forums! Looks like your getting a handle on posting, and you seem most educated about research. That's the way to be! We need to be our own advocates, and knowledge is power, well most of the time. Again welcome! :flowers:


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Michele,

 

I would like to take this opportunity to welcome you to this caring, supportive and experienced scleroderma community/family.

 

If you've spent any time at all reading threads, posts and/or links, you have found this to be a very informative place to be.

 

With so many (wonderful) posts before me, I will just stand by, for now.

 

Of course, you have got the hang of it, when it comes to posting here! There are very special people involved in this community, so I hope that you are able to share often.


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Michele,

 

I have horrible dry skin on my calves and hands, and just recently discovered Cetaphil Moisturizing Cream. It comes in a white tub with a blue lid, and I love it. I slather it all over my calves when I get out of the shower and it's really making an improvement where various random lotions didn't, even on my hands. It's like $13 but it's a big tub and for me it's worth it. Maybe it would help with yours too?

 

I hope you get some answers soon!

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Well, the rheumotologist wants other lab reports that I had and a pathology report for my shoulder. The problem is that I didn't get a pathology report and I don't think one was done.

 

The only things that I was hoping to accomplish is to get some plaquenil and something to control my calcium.

 

I may try to talk my primary care physician into plaquenil for my CFS diagnosis. Should I get something for that? It's either plaquenil or a wheelchair for me.

 

But, what am I supposed to do now? Wait to see if I need another surgery due to a calcium problem? What if it's a worse scenerio next time?

 

The rheumatologist is running a bunch of labs, but I expect them all to come back negative.

 

I'm really frustrated because no one bothered to find out what mysteriously developed in my shoulder. The surgeon didn't know what it was and didn't bother to find out.

 

For me since the surgeon ran no tests, the other doctors just shrug their shoulders.

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I'm just so angry right now the surgeon did not do a pathology report. That may have been a chance to slow down or stop things to come in the future. It was a lost opportunity and I'm the one left empty handed.

 

I don't understand how a surgeon could tell me he doesn't know what it is, he's never seen it before, send me to an oncologist, remove the thing and not send it to pathology.

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The rheumatologist is saying since my Raynaud's started around 12/13 that it's probably not associated with any autoimmune disease.

 

She says floaters are not associated. Lots of people have them.

 

I don't know why so many people on here have posted about them. They drive me nuts.

 

Basically, it's sounding like she doesn't think I have CREST.

 

But, this mysterious shoulder thing keeps nagging at me that something is going on.

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The aggravating thing is you can't do anything about a doctor's screw up. And, if nothing happens for another 3 years, he's got no liability. I'm going to give this surgeon a piece of my mind at the follow-up appointment.

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dejavu. I know it's hard to sit back and wait. The doctors tend to do that with us. Watching and waiting can help prevent a wrong diagnosis or it can prevent them from giving you a drug that may be to powerful for you at the moment but may be needed in the future. It might not work in the future as well if you have already been exposed to its properties too soon. I have been asking for plaquenil myself for a couple years. Once I almost left with a prescription. Then my doctor said wait 6 months until your next appointment see if you really need to start another medication. Six months went by and I was going to ask again, but in the meantime I was started on cholesterol medication, and osteo medication so I guess I am happy I am still not taking the plaquenil. I just get by with other anti-inflammatory medications that are prescribed to me. It does seem strange to sit back and know you are ill and not taking something for it. Time will tell what you will need, and when you will really need it.

 

I thought everything that was removed from a persons body went under some type of dissecting process at the time of surgery and also sent to outside laboratories. Maybe that only happens with suspected cancerous products within us. I really don't know but, you would have thought there would have been some type of pathology report. Sorry to hear things weren't taken care of properly. That does happen to all of us at one time or another.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Hi dejavu,

 

I'm sorry your doctor appointment didn't go as well as you'd hoped. My heart goes out to you, as I know very well what it is like to have hopes dashed over a possible diagnosis or a hoped-for treatment.

 

Maybe some of the testing that they are doing now will show something, you never know.

 

When people have calcinosis it often appears in multiple places in the body. So even an x-ray of your hands could still show if the nodule on your hand is calcinosis, and usually doctors can tell it's calcinosis just by looking at the lumps. Therefore, all is not lost if you still have the hand bump and if the doctor looked at it or will be x-raying it.

 

Calcinosis is also very easily recognized by surgeons, as it is a very common condition. In fact, because calcium deposits are so common, that is why they are not diagnostic of scleroderma in themselves and why they need to appear in conjunction with a whole constellation of symptoms. I have had several tumors removed that perplexed the pathology department. One of them had to be sent to several different labs for analysis over a period of months -- and it came back perfectly normal, albeit weird. To me the important thing was that it wasn't cancer and that is pretty obvious and is diagnosed or ruled out right away in the vast majority of cases. Anyway, they were just that, weird but benign growths, not diagnostic of anything (except perhaps inherited weirdness!)

 

Same thing with Raynaud's, because it is an extremely common condition in healthy people, and it very often onsets in young women. And of course, you figured out the floater thing by now, that the reason people with scleroderma have floaters is because they are very common in healthy and sick people alike, and not because of being caused by scleroderma.

 

We have continual issues trying to clarify on the forums what is normal and occurs in many people versus precise and documented symptoms of scleroderma. For example, nearly all people with scleroderma could claim to have thick calluses on their feet (especially if they haven't had a recent pedicure) -- and so could just about all of the regular, healthy people in the world. So even though people with scleroderma would typically have calluses, it does not mean that it's a symptom of scleroderma, or even that it is caused by a disease process.

 

One of the things that makes internet research on medical issues so very frustrating for all of us is that we can easily leap to conclusions about our health, while not having a full background of many years of medical training behind us. We just don't know the difference between things that can occur in normal and healthy individuals versus those that are directly related to serious illnesses. And how can we be expected to?!

 

Many things can frighten us out of our minds, not knowing the difference, for example, between an instance of dry eyes brought on by a fan blowing hot air at us for an afternoon versus continual burning dry gritty eyes for years that are part of diseases like Sjogren's. We read "dry eyes" and easily freak, whereas what is really intended is "totally bone dry eyes for days, weeks, months and years on end before an eye doctor will be able to see and diagnose dry eyes, which still means that it could occur all by itself or as a symptom of a disease like Sjogren's, which sounds very serious but like as not won't kill you or even disable you, and which is usually treated by symptom management only -- which means, often, using regular over-the-counter eye drops."

 

The best we can do is go to the doctor and ask them about our troublesome or worrisome symptoms, and let them decide, exactly as you have done. Plus, your doctor is not done with their evaluation yet as they will consider the test results, too.

 

You've done well, actually. You prepared as best you could, you brought your symptoms to a rheumatologist. You had reasonable suspicions under the circumstances. You have established a baseline, in case anything ever gets worse or changes, and you even have a rheumatologist on your medical team now to turn to, if/when you need to.

 

All of this is "good stuff", even though it is disappointing from not having a fast or easy (so to speak) answer to long-standing and perplexing health problems.

 

Here are some extra warm hugs, just for you.

 

:emoticon-hug::emoticon-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.

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