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New - Idiopathic Hypersomnia & Possible CREST


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#1 dejavu

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Posted 10 November 2010 - 12:05 AM

Hi.

I'm new. I don't have a CREST diagnosis yet. I see the rheumatologist tomorrow. The wiki page on CREST describes my grandmother to a T.

I developed Raynaud's at about 12/13. I'm 43 now. I started nifedine last week and am loving it.

I had according to my mother a "nervous cough" at 5. I have what seems to be a bad smoker's cough today. The cough my grandmother, father and I is unlike any other cough that I've heard. All of us smoke(d).

Last March, I developed a growth on my rotator cuff. The orthopedic surgeon said I don't know what this white thing is. He sent me to the oncologist who said it wasn't cancer.

It was surgically removed.

I'm part Choctaw and went onto the Choctaw Nation website to find out Choctaw Woman are more likely to get CREST, plus I saw this on the Mayo and other websites.

I've been going to the doctors for years begging for help. On 8/23/10, I was diagnosed with idiopathic hypersomnia similar to narcolepsy. I was sleeping 10 hours a night and most days taking 2-3 hour naps. I'm taking Xyrem now and starting to get some relief from my sleepiness.

But, at 43, I'm waking up to find out that I am a broken down old woman. The fatigue and weakness are just too much. Plus, I have an energetic 4 1/2 year-old to try to keep up with.

I'm now thinking that white thing in my shoulder was calcium. I suspect the lump in my hand may be, as well, but I'm not sure about that one. The doctors have no clue at to what it is.

No one has ever heard of calcium in the shoulder. I injured myself in the gym back in 12/09. But, for some reason in 3/10, the injury seemed to have filled with an unknown white substance that I believe to be calcium.

I'm really hoping to get plaquenil and some medications to keep the calcium under control. I also drink 1/4 to 1/2 gallon of milk a day. Plus, I was thinking of taking 5mg prednisone for a month or two until the plaquenil takes effect. Physically, living in NYC, it is difficult for me to walk a block to the drug store.

Wrong diagnosis lists the following as treatments for calcinosis.

Probenecid/Colchicine
Magnesium
Aluminium antacids
Sodium etidronate
Diphosphates
Warfarin
Diltaizem

I was thinking about the first on the list. I'll see what the rheumatologist says.

I also have floaters in my eyes, dizziness, dry hair, scalp, face, hands, calves and feet, brittle nails, thick skin and nails on little toes, bacteria on my tongue, arthritis pain since my 20's, CFS and FMS diagnoses, weird rashes that last years, sensitivity to sunlight, hair loss, but not noticable, periodic trouble swallowing, lots of infections, etc ...

One thing I'm wondering is if anyone else has irregular menstrual cycles. Mine is always a surprise.

Finally, to be unique if I don't sleep for 2 out of 3 consecutive nights I will become psychotic without an anti-psychotic medication. I know somehow my mental problem has to be related to my physical problem. But, I don't know what is causing it. I'm actually very, very, very sane.

My ANA and ACA came back negative. But, I'm still convinced that I have CREST. My primary care physician is going to wait for the rheumatologist's opinion since the blood tests were negative.

Michele

#2 dejavu

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Posted 10 November 2010 - 12:19 AM

I'm reading for CREST ANA is positive in 30% of patients and ACA is positive in 60% of cases.

So, does this mean that I can still have CREST with negative tests? I think it does.

#3 Sheryl

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Posted 10 November 2010 - 12:39 AM

Michele,
You finally were able to get on the forums and post. That is awesome. Welcome aboard our/your wonderful site. Yes you can have a negative results on your tests and still have a diagnosis of Crest.
Strength and Warmth,
Sheryl

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#4 Shelley Ensz

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Posted 10 November 2010 - 12:39 AM

Hi Michele,

Welcome to Sclero Forums! I'm sorry it's because you have concerns about possible scleroderma. As you know, it is familial in the Choctaw Indian Tribe, in fact because it is so common in Choctaw, that's how they were able to do the testing which helped them find genes associated with scleroderma.

However, just because it 'runs in the family' in some cases, does not mean that everyone, even people who have the genes, will get it. So the rheumatologist will be looking for very specific symptoms of scleroderma. In particular, it sounds like they will have to take a good look at your lungs, if they haven't already.

With or without scleroderma, you're still going to have challenges in trying to get better sleep and feel less fatigued. That's because narcolepsy is caused by a gene (specifically HLA DQB1-0602) and as our news team will be pointing out this week, that gene is also associated with significant sleep disturbances. I know and care about this, because I happen to share 0602 with you, and although I don't have narcolepsy, I have ongoing challenges with getting deep or refreshing sleep. I'm quite sure sleep disorders had a lot to do with my initial diagnoses, many years ago, of CFS and Fibromyalgia.

So, even though I'm not a doctor, and have no training at all, I'd hazard a wild guess that your hypersomnia is not 'idiopathic' but rather that there is a clear cause for it (genetics and narcolepsy) and you might want to take a copy of this very recent abstract to your doctor as they are quite likely to be unaware of it (yet). See our new Sleep Disorders section of the site.

Anyway, Michele, I'm glad you found us. We'll be here for you and you do not need to suffer, whatever it turns out to be, alone or in silence anymore.

:emoticon-hug:
Warm Hugs,

Shelley Ensz
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#5 dejavu

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Posted 10 November 2010 - 12:50 AM

I do not have the narcolepsy gene. They are debating whether to do a spinal tap to see if it is indeed narcolepsy with another cause. My father had a sleeping disorder to. At 10, I started oversleeping. Following a month long bout of the flu, I was hit with a wave of sleep that never left.

#6 Shelley Ensz

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Posted 10 November 2010 - 12:56 AM

Hi Michele,

Oh, I'm sorry I misread that! Obviously, I thought you were referring to the hypersomnia/narcolepsy thing. Well, no matter it's cause, any sleep disorder can be awful until it has been gotten under (at least some) control, somehow. And that alone can ruin the quality of life, as you well know.

Anyway, welcome to the forums again, and I hope you will get some answers tomorrow.
Warm Hugs,

Shelley Ensz
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#7 dejavu

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Posted 10 November 2010 - 01:02 AM

Also, my sister and 1/2 1st cousin do not seem to have CREST. I have one more 1st 1/2 cousin that I have to track down. Plus, I've sent word out to some of my other cousins just in case another family member has it.

#8 dejavu

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Posted 10 November 2010 - 01:16 AM

Well, it seems like Xyrem will work for my sleeping disorder. The medication costs $2,700/mo and does what it needs to. If I can just lick the physical fatigue, at least a little, and the calcium. My pulmonary disease doctor says my lungs are pretty good, except the current infection. My lung symptoms probably won't get really bad until I'm 55. I don't expect my legs to start bleeding until I'm 60.

I probably should start treating my dry skin now. But, I don't know what to use on my legs.

#9 dejavu

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Posted 10 November 2010 - 01:17 AM

My "narcolepcy" or IH started when I was 26 in '94. I wish we could edit posts here. I would have edited my post.

#10 Sheryl

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Posted 10 November 2010 - 01:30 AM

dejavu, there are many creams, lotions, and ointments on the market today that are better than ever for itching. There are even a few new ones out for severe itching. Also, there are prescribed lotions and ointments that your doctor can get you started on if others aren't working for you. If you are just suffering from dry skin that doesn't itch then regular creams will help. I myself keep a bottle of baby oil in my shower stall. When I have completed my shower I coat my legs thoroughly with the oil. Try not to get it all over the shower/tub floor or you will go slip sliding away. After coating my legs as I am drying off I just blot my legs of the water residue. Try this if you wish and see if it helps you out. What works for one person doesn't work for another but it doesn't cost much to try. Good luck.
Strength and Warmth,
Sheryl

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#11 Shelley Ensz

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Posted 10 November 2010 - 02:13 AM

Hi Michelle,

For dry skin, any moisturizer will help. Use it generously and often, and avoid harsh soaps when bathing. If you can't make a special trip to the store, you can even use vegetable shortening (like Crisco). It is especially good if you apply a heavy cream (or shortening) on your feet before bed, and then wear socks. You won't hardly believe the difference by morning. Getting a pedicure is also a terrific way to help combat dry skin on feet. I like to give myself pedicures often, and for a special treat, sometimes even get one at a nail shop, especially if calluses have built up bad.

Since dry skin isn't a symptom of sclerorderma, so you don't need to save it up to show your rheumatologist. It can occur along with Sjogren's syndrome but you'd have other, more meaningful and diagnostic, symptoms of dry eyes and mouth with Sjogren's. Generally speaking, anyone can get dry skin. Increasing humidity and moisturizers (as often as needed) and eliminating harsh (not moisturizing) soaps are the best ways to combat it (even for those of us with Sjogren's).

So the 'perfect' thing to use for dry skin is whatever you have available right now. And when looking for lotions/creams in the drugstore, go for things that are on the bottom shelf. They are not only the cheapest, usually, but are also more likely to not have a bunch of additives.

I also use Sheryl's baby oil in the shower trick, especially during the worst of winter. Sometimes I even use olive, almond or coconut oil (whatever I find in the cupboards). But I have to concur that it creates a terrible slipping hazard, and is very hard to scrub away, too.
Warm Hugs,

Shelley Ensz
Founder and President
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#12 Jeannie McClelland

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Posted 10 November 2010 - 03:21 AM

Hi Michele,

Welcome to the Forum! Getting the hang of posting sometimes takes a while. I'm glad you made it! (Thanks, Sheryl, for helping out. You're great!)

It sounds like you've got a lot to deal with. I have some sleep issues too and believe me, it makes everything feel that much worse. I found that as the doctors started to get one symptom sorted out, and then another, I felt better and better. I hope you will too.

That dry skin and itching is such a nuisance. There are times I've walked around with my own personal snowstorm and we won't go into details of what the inside of my black jeans looked like. The things that helped me the most were eliminating soap (I use a face wash product for sensitive skin all over my body), using a 'free and clear' laundry detergent and a second rinse cycle, NOT using fabric softeners (that one really made a difference) and only using the lotion my dermatologist recommended. I also use something like a petroleum jelly on my feet and hands at night. And lastly, making sure the humidifier is on in the winter. I live in Colorado and the extremely dry air and the forced air heating do a real number on my skin.

Is today the day for your rheumatology appointment? Good luck and please let us know how it goes, OK?

Best wishes,
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#13 Amanda Thorpe

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Posted 10 November 2010 - 04:56 AM

Hello Michele

Welcome to the forums! You have a lot to contend with and I hope you get some answers from the rheumatologist.

Take care and keep posting.
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#14 dejavu

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Posted 10 November 2010 - 05:06 AM

Jeannie,

No. I have my appointment tomorrow.

My grandmother had the cracked and bleeding legs. She sent me a tub of some thick lotion in a gift package when I was in my young teens. If there was a letter attached, I don't know.

What I do know is that she was trying to tell me something. My mom thinks she still has it and may send it, so I can see what my grandmother wanted me to use. She passed away in '86. So, the large tub of ointment is about 29 years old. But, I was under the impression that it was prescription lotion.

She was a very poor woman. I don't know why she sent me her lotion when I know she needed it. I wish she had just told me what she used.

Michele

#15 dejavu

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Posted 10 November 2010 - 05:27 AM

I'm also taking Vitamin D. I read in the welcome notes that some people thought scleroderma was caused by low vitamin D. Mine was low. It's the only thing that has been abnormal in my blood work, other than abnormal folic acid, but I think that was associated with my not eating enough green leafy vegetables. My doctor has me taking folic acid by prescription too. Now that I'm eating more broccoli I'd like to test it again and discontinue if it's normal. But, I can't keep asking for all these tests. So, I'll wait until next year.

So, I take 5,000 IU of Vitamin D. I can't see testing it all the time. At 2,200 IU my Vitamin D was in the lower end of the normal range. I thought I'd like to be more normal and upped the dosage.

I want my daughter's Vitamin D checked now. If there's an association that catching it early can't hurt. Even if there's not an association catching low Vitamin D can be good to prevent unnecessary fractures.

#16 Jeannie McClelland

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Posted 10 November 2010 - 11:37 AM

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
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#17 enjoytheride

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Posted 10 November 2010 - 11:50 AM

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?

#18 Shelley Ensz

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Posted 10 November 2010 - 12:42 PM

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
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#19 Joelf

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Posted 11 November 2010 - 01:23 AM

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. :)

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#20 dejavu

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Posted 11 November 2010 - 03:45 AM

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