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Debbie C
01-14-2015, 12:08 PM
I am now seeing Dr. Carol Langford, since my other dr. retired from up there and I must say she is wonderful. I have only seen her one time but she stays on top of things. When I went up there, she had me do another urine test and when she got the results she called me and want me to see a uroglogist concerning my bladder from the cytoxin use. Then she ordered a bone denisity test since long term steroid use. I had that done last week. She just got the results yesterday and called me,but I had missed her call so she called me first thing this morning and wants me to see a endrocrinlogist ( sp) because my bones are bad and she was explaining how she perfer I get a shot instead of pills because of my history of esphogus and stomach issues.I am so impressed with her that she took the time to really know my history and called me with a problem. She also said my calcium was 2 points above normal and she is going to keep in eye on that. If there is anyone that is looking for a good dr. I would HIGHLY recommend her.

mrtmeo
01-14-2015, 01:07 PM
That is awesome!
I am so glad you have someone that you like and knows so much about this disease.
Did she do a 25 hydroxy D3 test?
There is a study that shows 10 prunes per day reverses osteoporosis.
I give my mom boron instead because she can't have that much potassium.

BookNut
01-14-2015, 04:09 PM
I had great luck with 1500 mg of calcium per day and 5000mg of Vitamin D. My bones improved significantly. Of course the third thing I did was walk almost every day. My asthma has been preventing that for the past three years, so things have deteriorated. As soon as our weather allows it, I hope to start walking again. Starting over is a bit frustrating. Back to 10 minutes a day, rather than the 90 minutes I used to do. It wil be starting over again...but hopefully I will be able to get back into shape again.

Glad you are having a good experience with Cleveland Clinic. My bad experience with them continues. I asked for my records on Oct. 10. They just arrived 2 days ago....and they were FAR from complete. They indicate what tests I had...but, except for the blood tests, there were no actual results. Nothing about my PFT tests, no narrative, let alone a CD of my CT scan as requested. What good is that? And it cost me $35 besides. Grrrrr....

annekat
01-14-2015, 04:22 PM
I'm glad you saw Dr. Langford, Deb, and that you are happy with her. She is up there as one of the very best in terms of reputation as an excellent WG doc. The bureaucratic problems that Jacquie keeps running into are very unfortunate and shouldn't be occurring at a world class facility like that, or any facility for that manner. It sounds like they really need to get their act together so that their customer service matches the excellence of many of their doctors.

Jaha
01-15-2015, 08:59 AM
I'm so glad that you have a doctor that will stay on top of things and that you like her. It is very important that our specialist keep an eye on our test results. I'm sorry that you are having bone loss, but it seems that she will make sure you get the right tx for it. I think sometimes doctors get to many patients and then the patients gets short changed. I have been going to CC for over 4yrs now and have never had any problems getting copies of my reports or cat scans cds, I have always found that their customer service is very good. Deb wishing you all the best with your new doctor.

Debbie C
01-15-2015, 12:25 PM
Jacquie,its hard to believe that you are still having problems with them and they should not have charged you anything especially if you had the tests done there. You can sign up to get your reports online from there. I would be calling them up a raising H#@% !! She wants me to see an endrocrinogolist (SP ?) but there are not good ones here so I may look into the ones she suggested up there. I just don't look forward driving to Cleveland in the middle of winter.
Mrtmeo..the test I had was called a Dexa Bone Density Axial Skeleton..I don't know if its the same thing ? But it states that L1 - L4 bone mineral density has been decreasing at a rapid rate of -9.1% per year !!! YIKES...that doesn't sound good. We talked about the prune thing before and that's not for me. I would be in the bathroom with my cell phone and laptop all day !

Thx ya'll for your comments, I really just wanted to put the word out there that she is one of the good ones in case there are still people needing one and are able to go there.

mrtmeo
01-15-2015, 01:34 PM
Hi Debra,
I was asking if you had vitamin D test done which is the 25 hydroxy.

Debbie C
01-16-2015, 08:29 AM
Hi Debra,
I was asking if you had vitamin D test done which is the 25 hydroxy.

Yea they test my Vit.D level every other month and it was 55 last week. I take 2000 iu every day.

mrtmeo
01-16-2015, 12:04 PM
Yea they test my Vit.D level every other month and it was 55 last week. I take 2000 iu every day.

Is that ng/mL or nmol/L?

Debbie C
01-19-2015, 06:24 AM
Is that ng/mL or nmol/L?

It was ng/mL

mrtmeo
01-19-2015, 08:40 AM
Hi Debra,
Do you know what your calcium levels are at?

Debbie C
01-19-2015, 12:05 PM
Hi Debra,
Do you know what your calcium levels are at?

They are the highest they have ever been..they are at 10.4 but the range is 8.6-10.2 so it isn't bad. I have just never had it high before ,but the dr. said she is going to keep in eye on it. And I saw my kidney dr. last week who is also very experienced with wg and he wasn't concerned and is having me come back in 5 months and having me do a more in depth urine sample next time before I come in. I am sure everything is fine so I am not going to worry about it.

mrtmeo
01-19-2015, 03:47 PM
They are the highest they have ever been..they are at 10.4 but the range is 8.6-10.2 so it isn't bad. I have just never had it high before ,but the dr. said she is going to keep in eye on it. And I saw my kidney dr. last week who is also very experienced with wg and he wasn't concerned and is having me come back in 5 months and having me do a more in depth urine sample next time before I come in. I am sure everything is fine so I am not going to worry about it.

Did your drs happen to do a parathyroid test?
They should really be checking for hyperparathyroid.
Hopefully, it is nothing, but I would have them check further just to be sure.
I wouldn't wait 5 months.

Here is more info on causes for high calcium
High Calcium in the Blood: Causes of High Blood Calcium Levels. (http://parathyroid.com/high-calcium.htm)

Debbie C
01-20-2015, 07:31 AM
Did your drs happen to do a parathyroid test?
They should really be checking for hyperparathyroid.
Hopefully, it is nothing, but I would have them check further just to be sure.
I wouldn't wait 5 months.

Here is more info on causes for high calcium
High Calcium in the Blood: Causes of High Blood Calcium Levels. (http://parathyroid.com/high-calcium.htm)

That was a good article .I had a pft test done back in July and Aug of last year and then it was 26 and 32 and that ranges from 15-65. I go get my "monthlys " done again in a couple of weeks, I'll ask if she wants that checked at the same time. Thx for the info. I also checked back on my past Calcium levels and they go up and down ...it has just never been like this so we will see. Its funny when I first got this disease ,every little thing worried me...don't get me wrong, I still worry from month to month ....but I am not gonna let this disease drive me crazy about what might happen. And how weird is it that "monthlys" have a totallay new meaning now.That may go over the guys head..its more of a woman thing !!!!

Pete
01-20-2015, 07:44 AM
And how weird is it that "monthlys" have a totallay new meaning now.That may go over the guys head..its more of a woman thing !!!!

Got it!! LOL :wink1:

mrtmeo
01-20-2015, 10:17 AM
That was a good article .I had a pft test done back in July and Aug of last year and then it was 26 and 32 and that ranges from 15-65. I go get my "monthlys " done again in a couple of weeks, I'll ask if she wants that checked at the same time. Thx for the info. I also checked back on my past Calcium levels and they go up and down ...it has just never been like this so we will see. Its funny when I first got this disease ,every little thing worried me...don't get me wrong, I still worry from month to month ....but I am not gonna let this disease drive me crazy about what might happen. And how weird is it that "monthlys" have a totallay new meaning now.That may go over the guys head..its more of a woman thing !!!!

Hi Debra,
Your levels are within the range listed on the page, so it is probably nothing to worry about, but it is nice to know what to look for when calcium goes up and the drs say nothing about it.
We have know what to ask for and know what our blood work means so that we can get proper treatment.

im so blessed
01-23-2015, 08:12 AM
Hi Deb, I live in Pa and my insurance wont cover cleveland clinic but i just got a new ruehmy from hershey and i am now waiting on a call from her. She is friends with dr. Langford and is going to contact her and see what advice she will give for rutuxin for an airway flare...so im happy you like her :)

Debbie C
01-23-2015, 11:33 AM
I am surprised your ins won't cover CC but they do have financial assistance you might want to check on if you want to go. Yea,Dr. Langford is great. I had to call to get a referral to see another dr. about my osterporsis and I also wanted to ask if I should get the bloodwork to check my thyroid since my calcium was up. She called me back at 7:00 that night said the referral was made on the 16th and she wants to see what my levels are this time before checking other things. So my point is ( finally !!) is that she will work with your dr. and stay on top of things. And if she thinks there is a problem she calls right away. Good luck to you,hope you flare goes away soon :)

Velma
01-27-2015, 09:54 AM
I met her and was examined by her a few months ago and I quite agree she is a very nice lady and a wonderful doctor. I was very impressed.