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Saw My Rheumy Yesterday


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#1 Sweet

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Posted 14 April 2007 - 08:49 AM

Hi Everyone,

I had my every 4 month rheumatologist appt. yesterday. Nothing too earth shattering, other than he's concerned about an increase in my hip pain and upper leg muscle weakness. He thinks I may have a Vitamin D deficiency. He drew blood and I should get the results next week. He talked about getting weekly infusions of 50,000 units of Vit D. I'll let you know, when I know.

Didn't we just have this discussion not too long ago? I couldn't find the thread. If anyone finds it can you post it?

Thanks,
Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#2 ErinF

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Posted 14 April 2007 - 09:04 AM

Hi Pamela,
I remember reading somewhere that vitamin D deficiencies are often found in people with autoimmune diseases. It really does seem like our bodies have decided to throw in the towel and make an external force do all the work for us :lol: My sister (the one who has had Raynaud's for years) is vitamin D deficient and even moved to a sunnier, warmer climate to help with her health. She swears by the sun for helping her. Ayou going to do the vitamin D infusions? Will that take a long time?
Also, you mentioned hip pain and upper leg muscle weakness--that's what I have and the rheumatologist I saw didn't seem to think those could be related to sclero. I have days where I truly cannot walk up stairs, and I'm only 35 years old. How long have you had that? Was that one of your earliest symptoms?

Thanks,
ErinF

#3 janey

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Posted 14 April 2007 - 09:04 AM

Sweet,
Here's our section on Vitamin D Deficiency, a possible Cause of Scleroderma. I also found a thread where is was discussed. Another doctor's visit stating low in Vitamin D.

Dr. Visit - Sclero

From all the reading it sounds like a very important vitamin that we all need.

Hope this helps. Let us know your results.

Big Hugs,


Janey Willis
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#4 CarriePan

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Posted 14 April 2007 - 09:20 AM

Dear Pamela,
Ugh! Why can't they just take a pint of blood and do every test under the sun LOL What a pain....
I hope everything turns out ok.
I know that I'm sick but all my test <other than blood work for sclero and antibodies stuff> comes back normal. Maybe I'm just imagining these pains?? LOL Only thing left to ultrasound is my brain LOL hmmmmm Maybe they should have started there HA!
Feel better
Hugs~
Carrie
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#5 Sweet

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Posted 14 April 2007 - 09:51 AM

Erin - Yes the sun is an excellent source of Vit D, and I've been a sun bum my whole life, except for the past 6-7 years. I'm still out in it, but don't stay out long and wear sunscreen (which my doctor just told me would blocked any absorption of Vit D) for two reasons. In addition to sclero, I have Lupus so need to stay out of the sun and last summer I had cancer. I had a melanoma removed from my leg. I'm not sure if I'll even need to do the infusions, I need to wait for the results next week, but basically I'll do whatever he tells me too! He thought if it was due to low vit. D then I would see a big difference with my hip pain, which man, would make me soooooooooooooo happy. It's a big symptom for me, I rarely sleep due to the pain, nothing helps with it. I can't walk for long, I can't sit for long, it's bad. I've had this pain for about 7 years, it's what made me go see a doctor in the first place. Anyway, maybe you should check into it. My rheumatologist says there is new information being brought out right now about Vit D and the connection with autoimmune diseases. He's been checking levels on all of his patients over the past couple of months and says he's shocked at how many positive results he's getting.

Janey- Thanks for finding that for me! You are the best!

Carrie - Don't laugh, I had my head scanned just a few months ago! :D And guess what they found???? I HAVE A BRAIN!! I was so excited about that, I thought perhaps I had received my Master in Health Administration by accident. :lol:
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#6 Sweet

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Posted 14 April 2007 - 09:56 AM

Janey,

That is the exact link I was looking for thanks. Whirlway and I have the same rheumatologist!

Thanks again.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#7 Guest_Sherrill_*

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Posted 14 April 2007 - 11:04 AM

Hi Sweet,

As you'll see from the link that Janey gave you to the discussion on Vitamin D, I have a severe deficiency. They seem to be finding more about Vitamin D all the time! Incidentally, if you want to see that discussion without all the words "Vitamin D" highlighted in yellow, here's the link: Dr. Visit

When you search the Forum for a particular word/s the search engine highlights the words in the resulting discussion. Personally I find it rather distracting. :blink:

I hadn't heard of Vitamin D infusions so would be interested to hear more about that. I take a high dose prescription Vitamin D once a month called Calciferol.

Warm hugs,

#8 Sweet

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Posted 14 April 2007 - 02:12 PM

Hey Sherrill,

Thanks for the info. I'm not great and doing searches for things, and I've never had one show up with the highlighted words, I must be doing something wrong...or right! :D

Sorry you are dealing with the low Vit D too. I will certainly let you know what I find out about the infusion.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#9 Sweet

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Posted 17 April 2007 - 09:01 AM

Just to let everyone know, my Vit D levels were normal. :)
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#10 Sam

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Posted 17 April 2007 - 09:40 AM

Sweet, I'm glad it was ok. So what is the next step? Sam
Sam

#11 Heidi

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Posted 17 April 2007 - 11:01 AM

Hi Sweet,

That is good news! I am glad it came back showing normal levels.

Warm wishes,
Heidi

#12 Sweet

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Posted 17 April 2007 - 11:50 AM

Well I'm not sure there is a next step. The pain has always been thought to come from the disease process, but he just wanted to make sure it wasn't due to something simple we could fix. So now that it wasn't the "simple" thing of low Vit D. I just continue to deal with the pain I guess. Bummer....
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#13 shari42

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Posted 18 April 2007 - 07:59 AM

Hi Sweet,

I went to my rheumatologist 2 weeks ago, and I also have a Vitamin D and Vitamin B deficiency. I posted a few weeks ago about feeling so fatigued that I fell asleep at the nail salon, maybe that's why. There has got to be some correlation between these vitamin deficiencies and our illnesses. I also had increased protein in my blood. I think I'm going to post a new thread about the whole visit, b/c I'm kind of nervous and confused about what they are talking about....

Lots of hugs,

Shari

#14 Jenny

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Posted 18 April 2007 - 08:59 AM

Hi there,

I have diffuse sclero with Raynaud's, I am living in northern bc. I will be moving back down south as it is so nice and warm! I have severe Raynaud's, can you tell me more about the vitamin d? The doctors say that the cold will make the sclero flare up?Any feedback would be great

Thanks

#15 Sweet

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Posted 18 April 2007 - 12:56 PM

Hi Jenny,

Look further up this thread and you will find several links to information on Vit. D.

:)
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)