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Series Of Tests At UCSF, San Francisco, Ca


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#1 Kamlesh

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Posted 20 December 2007 - 09:22 AM

Dear friends,

Have not posted for a while, but just keep watching the newsgroup.
I have been through several tests this month. Just to name a few 24 hour pH probe test, esophageal manometry test, Upper GI barium swallow test, and several blood tests at UCSF in San Francisco.

UCSF San Francisco has its own culture and top notch doctors and equipment. They do not believe in wireless version of pH probe test as it is not accurate. They require you to stop all acid reflux medications two weeks prior to the tests. This became a major issue for me, without Aciphex (Nexium or other medications do not work for me), my body was acting violently. Had difficult time keeping any food in my stomach and severe heart burns. When I went through the test, I noticed my pH was going below 1 several times a day below 1 (Normally, it should stay above 4). I have not received my results, but it looks like I have very severe acid reflux.

Esophageal manometry test, I did not find a major difference.
I have through Upper GI barium swallow test earlier, but the test at UCSF was very different almost customized to my medical condition and done by Radiology MD and not by just technician. He studied my manometry tests and identified all different ways he needs to take the test in different positions and times. It took almost over an hour for him to complete the test.

The blood test showed I am very deficient in Iron.
I would not know much about the outcome of the tests till I have an appointment with Dr. Patti in UCSF on January 8th.

At the Scleroderma front, I am doing well. I do not know exact interpretation of remission, but I am off Cellcept for over three months now and no flare ups. My Raynaud is staying under control by using Nifedipine and Colchicine.

So I am glad to count my blessing. Next battles to tackle would be acid reflux, depression and sleep disorder.

Although painful, but it was worth going to UCSF.
Kind regards,

Kamlesh


#2 truman

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Posted 20 December 2007 - 12:11 PM

Kam:

Seems like the situation is under control via tests, doctors, and your mind set. Now, just enjoy the holidays and continue with the results and future treatments with the positive attitude you have always shown.

Happy holidays to you and your family and best of health in 2008! :D
Tru

It is what it is...........

#3 WestCoast1

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Posted 20 December 2007 - 06:17 PM

Hi there Kamlesh, thanks for giving us an update. I am glad to hear that scleroderma isnt out of controle right now. I will be hoping that your acid reflux subsides over the holiday and you are able to relax and enjoy yourself.

If you can, please let us know what the doctors say about your iron deficiancy.
*WestCoast*

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#4 janey

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Posted 21 December 2007 - 05:49 AM

WOW Kamlesh,
You're really getting a work over! A good one at that. It all sounds very thorough and they are getting some answers. Sorry to read about all the discomfort you are going through, but if they came find the source, then they can possibly find a solution. Thanks for keeping us updated.

Big Hugs,
Janey Willis
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#5 Sweet

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Posted 21 December 2007 - 06:33 AM

Hey my friend,

Goodness, you certainly went through the gamut of testing didn't you? Sounds like for the most part it was good news. I'm really really glad that right now you are feeling a little better, not having any flares, and I hope it stays that was for you!!
Warm and gentle hugs,

Pamela
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#6 Kamlesh

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Posted 21 December 2007 - 08:05 AM

Hi Erin,

I am having significant fatigue and low Red Blood Count. So my doctor decided to test all necessary elements such as iron, folic acid, B12 etc. My iron came out too low. Being vegetarian, there is no good source of iron. So my doctor asked me take iron supplement and he will ask me to go through another test after few months. If still, it shows low iron that means my body has lost ability to absorb iron. In that case, he will have to use direct injection of iron supplements in my blood.
Kind regards,

Kamlesh


#7 peanut

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Posted 22 December 2007 - 12:17 AM

Kamlesh,
I'm sorry that you were under some discomfort but it is good to start having some answers. I have had success with B vitamin complex injections although it burns sooo bad. I did not feel the effect immediately but after my 4th shot I felt my energy levels return to almost normal - almost no fatigue! The doctor has me do them once every 2 weeks.

Good luck & Happy Holidays,

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#8 Angie

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Posted 22 December 2007 - 07:05 AM

Hi Kamlesh,

I also live in the San Francisco Bay area and am seen by the good doctors at UCSF. You mentioned that you are off Cellcept .... are you being treated by Dr. Golden and staff at UCSF's Interstitial Lung Disease Clinic? I just had my first appointment with Dr. Golden and Sally McLaughlin on Thursday (prior to a PFT, CT scan, and 6 minute walk test). They are fantanstic! I will be treated by the clinic now due to the start of pulmonary fibrosis. They were considering me for a clinical trial with Cellcept, but my diffusion capacity is not bad enough yet (70&).

I also have participated in Dr. Kari Connolly's skin biopsy study and see her once a year just to make sure my local doctors in Fremont are on the right tract.

If you live in the area, we have a really neat scleroderma support group that has been going strong for 9+ years ... please join us if you can!

Take care,
Angie

#9 Kamlesh

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Posted 22 December 2007 - 08:50 PM

Hi Angie,

I have seen both Jeff Golden and Kari Connolly. I agree, both of them are fantastic doctors and UCSF is very good institution. My only problem is, it takes a whole day for an appointment, and finding parking in the area is difficult. I have wonderful doctors locally also. specifically Pulmonary specialist, rheumatologist, and GI specialist.. Dr. Jeff Golden continued to insist that I consider surgery for my acid reflux. I have an appointment with Dr. Patti on January 8th for further options.

I understand there is a support group in Fremont and I might try to stop by next time.
Kind regards,

Kamlesh