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Other Platelet Disorders

Rheumatologist today

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 5 months ago #3854 by Sandi
Rheumatologist today was created by Sandi
I think the appointment was uneventful. The trip down to the city was not. I ended up with a boot on my tire and a $50 fine for parking in a reserved spot in a parking garage, but didn't care as long as I could get back out of that city! Four hour event to go to the doctor.

Anyway, the only thing I found out was that after taking 50,000 IU's of Vitamin D for 12 weeks, my D level went from 18 to 20. Still under the norm, so back on high dose Vitamin D. For those of you who think your daily OTC supplements are good enough, don't count on it. I had been taking daily OTC D for a very long time, and my level was still low. High dose didn't do it either. I have no muscle mass and no muscle strength. I've tried, but can't even build it up. My advice - get tested. It's amazing how many people have low D and don't know it. I was sure mine was fine. It's not.

I have no idea why I can't hold any Vitamin level without high doses. No one seems to care, just treat as needed. I only find these things out when I ask to get tested for something. More advice: If you feel tired, out of it, weak, etc.....don't assume it's ITP. There are many reasons why that could happen and I am finding out that I have low levels of many things that cause fatigue. I can't keep up with it all.
  • Kim
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  • Diagnosed with ITP in 1983, lupus in 1990, APS in 2001, vasculitis in 2006. Current platelet count 148. In 2007 I had a stem cell transplant for autoimmune disease and currently ITP and APS remission, with a reduction in lupus activity.
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15 years 5 months ago #3856 by Kim
Replied by Kim on topic Re: Rheumatologist today
Sorry about the boot...can't believe they did that, just for parking in the wrong spot. Yikes, they are tough, although maybe it's better then a sticker you can't get off.

I agree with the vitamin D -- I also had to do several rounds of high dose to get my levels above 20. I take 2000 IU's daily and still below 25. Many autoimmune patients have the problem, so people should get checked, especially if you have symptoms.
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15 years 5 months ago #3859 by rhonda
Replied by rhonda on topic Re: Rheumatologist today
I love my Vitamin D. I am taking 2000 iu a day, plus the multi vitamin and calcium pills, and the increase in my level was enough to make the doctors happy, but it didn't get me into range. The doctors biggest concern was if it would cause further damage to my kidneys. So she asked me to ask my PCP for the prescription. I didn't get one because my PCP isn't aware that there is 50,000 iu available. So I am still taking 2000+ iu.
Tomorrow is my second visit to the rheumatologist. I now have a copy of the labs that he ran last week. My ANA and dsDNA are definitely high. I went to the GI doctor yesterday, and I ended up with another prescription. I should get some stock in the pharmacy.
Sorry you got booted. We also got booted, and they charged us $100.00. A friend was charged $300.00 when he was booted by the city. A neighbor cut off the boot, and the company took him to court charging him $400.00. Maybe we should take them to court for causing stress. We should be able to fight back. Next thing you know, the panhandlers at Wal-Mart will be going around booting cars for additional income.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 5 months ago #3875 by Sandi
Replied by Sandi on topic Re: Rheumatologist today
Well apparently the guy who rents the space pays $600 a month for it and he was very upset that it was taken. I would have been too. This was my jaded thinking at the time: I kept driving around looking for a spot that didn't have a reserved sign on it. I couldn't find any. So I thought, maybe those reserved signs are there to reserve spaces for people who want to park in this garage, like me! I convinced myself of that and picked a spot. I know better because I have my own reserved space in the garage near my job that I pay for monthly. Oh well.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 5 months ago #3876 by Sandi
Replied by Sandi on topic Re: Rheumatologist today
As for Vitamin D, I thought this article was interesting:

www.omrf.org/OMRF/News_Releases/Releases/2009/20090804.asp
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15 years 5 months ago #3910 by tortie
Replied by tortie on topic Re: Rheumatologist today
What a crappy day........... Have you tried getting one of those spectrum lights to help absorb the vit D? Maybe it would help.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 5 months ago #3920 by Sandi
Replied by Sandi on topic Re: Rheumatologist today
I'm not familiar with those - are they Lupus-friendly?
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15 years 5 months ago #3925 by tigereyes
Replied by tigereyes on topic Re:Rheumatologist today
Sandi,
I love your thinking. Im sorry your day was so crappy. I know how it is with parking I park 2 blocks away and walk to work. I dont want to pay the monthly parking fee and choose to walk.

Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 5 months ago #3932 by Sandi
Replied by Sandi on topic Re:Rheumatologist today
Hey guys - I got my TENS today and so far, it seems to be working! I've had it on for 8 hours now and I can finally feel a difference. I was told it would take a few days to get the full affect, so maybe it can only get better. This was one non-medication option that my doctor gave me, because side effects have been impossible lately. I finally have hope again.

Tuesday I am getting Trigger Point Injections (steroids and novocaine) in muscles, so maybe that will help also.
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15 years 5 months ago #3943 by tortie
Replied by tortie on topic Re:Rheumatologist today
I found this article, there are more out there on the subject. I believe this is the same lighting as a grow light. You can get them in small or large florescent tubes or in the large bulb style. I use to use them in my business when I had to colour match. There was nothing better than that lighting to see the correct colour. After reading this I might just get one and give it a try for health reasons.

The whole article at:
consumerhealth.org/articles/display.cfm?ID=20000102232127

A few interesting paragraphs below.

FULL SPECTRUM LIGHTING Since full spectrum light requires a fluorescent tube, the full spectrum lighting manufacturers had to make all the necessary changes. They put in electronic ballast; they put in the right phosphors to produce all the frequencies of light, and they shielded them. John Ott showed in many school studies that when you can change the school lighting from incandescent or fluorescent to full spectrum, students' grade point averages will go up half a grade point, they will stay out of glasses longer, they will be less hyper, and strangely their dental cavities drop like a rock. And the reason? It stimulated vitamin D on the skin, resulting in more calcium to the teeth and less dental decay. Full spectrum light helps depression and the immune system during the winter, and it is the only natural colour to use for viewing artwork and other colour products.

FULL SPECTRUM EQUIVALENCE TO SUNLIGHT If you get six hours of full spectrum light in either fluorescent bulb form, fluorescent tube form or light box form, you are probably close to your 30-minute equivalent of sunlight. If you can get full spectrum lights in your working environment, you can boost that. You don't have to have direct light. Light will bounce off of floors and tables; it will go into your eyes. You don't have to be in direct sunlight when you are outside either. You can be under a shade tree and be getting your lighting. It is enough to have sunlight on your face in the wintertime because that will activate vitamin D, and more importantly, since 98% of sunlight comes in through your eyes, you are O.K. John Ott showed that if have full sunlight or its equivalent in full spectrum light in the vicinity of your computer, it would open up the blood stream and basically counteract the drowsiness. So it is really nice to have sunlight or full spectrum lighting within four to eight feet of your computer area, or your television. The outer glass or plastic on full spectrum tubes and bulbs is light conductive.

WHERE TO BUY THEM Full spectrum bulbs are generally available in plant stores and pet stores because they never use anything but full spectrum lights on all their plants and animals. They are treated better than humans. On the other hand, there are a lot of mail order companies that market full spectrum. (Consumer Health also sells full spectrum bulbs.)

I'm hope the tens machine continues to help. My husband has one from a major back injury.

Adios, I hope to be back early next week.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 4 months ago #4312 by Sandi
Replied by Sandi on topic Re:Rheumatologist today
Hmm. That's interesting. I need to buy some lights for my office at work and stop turning on the flourescents. I'll look into those.

I got 8 trigger point injections on Tuesday. Between those and the TENS, I feel like a new person (and NO side effects). I have a UTI and sinus infection, so once I get past those, I might be okay for a while.

I would definitely get the injections again, in fact, they can give them once a month for a few months, then you have to stop for a while. The result is so worth the discomfort of the shots!
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15 years 4 months ago #4360 by PennyLane
Replied by PennyLane on topic Re:Rheumatologist today
Sandi, where do you get the injections, and why? Sorry if I missed it.


I live a city that gets only 1,500 hours of sunshine a year, so it's not surprising that my vitD is really low. I take 50,000 units a week, and have been for 2 months. Some of you take that much, and it's still not enough?? I don't know what my actual level is, I guess I should find out.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 4 months ago #4382 by Sandi
Replied by Sandi on topic Re:Rheumatologist today
I took 50,000 IU's a week for 12 weeks and it didn't do anything.

I got the injections in my neck and upper back muscles. I have myslgia and cervical disk degeneration.