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Columbia, SC Allergist (Read 2103 times)
CindyP
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Columbia, SC Allergist
04/18/16 at 04:08:07
 
Joan requested I post info on the doctor I've found in the Columbia, SC area.  

Dr. Hector Rodriguez
Allergy Partners of the Midlands
http://www.allergypartners.com/midlands/lists/providers/Provider.aspx?ID=22

Repeat from MUSC thread:

So today I saw an allergist/immunologist that made a great first impression.  His name is Dr. Hector Rodriguez.  He came across as very knowledgeable, yet humble.  When some of the symptoms didn't fall neatly into the typical guidelines, he said, "That's why we're told the patients haven't read the textbooks".  He's a young doctor, but has worked with doctors at Vanderbilt University that treated MCD patients.  He spent a good hour and a half asking very detailed questions and really listened to my answers.

He's running both a tryptase test and 24 hr methyl-histamine test.  Meanwhile, he's increased my dosage of zyrtec and pepcid, and given me an Rx for Singulair.  He's written out specific instructions for any drug usage, like avoidance of opiates and contrast, including his recommendations for substitutes.  He also gave me a written order for a tryptase test to be done if I have reactions.
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CindyP
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Re: Columbia, SC Allergist
Reply #1 - 05/12/16 at 05:17:05
 
Thought it would be a good idea to update this post.  After my tryptase and methylhistamine test results came back normal, Dr. Rodriguez seems to be finished with me. Unless I end up in ER and a tryptase test comes back elevated, I don't need to see him again.  He doesn't suspect MCAS.

When I asked his nurse about the ongoing symptoms, she said, "I'm not familiar with your case.  What are your symptoms?"  Well, I didn't think going over my whole history over the phone was the thing to do, so I just said my main symptom is pain in my legs and arm.  She called back later after talking to the doctor and his suggestion was to see my GP and be tested for arthritis.  Hearing this was a big disappointment since Dr. Rodriguez had all my test results and knew arthritis was ruled out by a rheumatologist.  We even discussed it during my visit.  

Even I know enough about MCAS to realize normal results on these two test does not rule out MCAS.  I've read numerous case studies from Dr. Afrin of patients with MCAS that repeatedly have normal tryptase and/or histamine.  If my history was enough for Dr. Rodriguez to order these 2 tests and start me on the antihistamine/Singulair protocol, wouldn't it be wise to dig a little deeper?  Or is this typical of most doctors claiming to have 'some' knowledge of MCAD?

After hearing that he doesn't suspect MCAS, I went off the meds.  Within a few days it was clear that they were helping to some degree.  Several symptoms returned, including the itchy rash on my neck.  So despite my disappointment, I may eventually see him again, simply because I have no where else to go at this point.  

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Joan
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Re: Columbia, SC Allergist
Reply #2 - 05/14/16 at 17:51:09
 
So disappointing when a doctor gives up!  You might want I try again, but brace yourself in case he has a negative response.
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CindyP
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Re: Columbia, SC Allergist
Reply #3 - 06/21/16 at 08:32:22
 
Good news!  Dr. Rodriguez has not given up on helping me!  

There must have been a miscommunication when the nurse relayed the message.  He didn't suspect MCAS, but he hasn't ruled it out.  I had the understanding that he believed it was ruled out and he wasn't going to pursue any further investigation of the matter.  I sent him a letter to respectfully request that he reconsider and outlined a few reasons why I would make this request.  After a few weeks and not hearing from anyone, I assumed I had exhausted that resource.

I called yesterday to request a copy of my test results, thinking I would eventually take them to another doctor....though I didn't know who.  The nurse called me back this morning to say she would email me the results, but also the doctor would be calling me later.  

He actually spent about 20 minutes on the phone with me.  He began by apologizing that he'd not called sooner.  He had taken my letter home to look into it further and it "slipped through the cracks".  

Long story short....He's ordering tests to rule out pheochromocytoma and carcinoid.  He's giving me orders for repeat tryptase and N-Methylhistamine in the event of an episode, although he acknowledges my symptoms haven't been acute.  He is also searching for another doctor that has experience with MCAS.  He specifically mentioned contacting Dr. Frank Lichtenberger in NC.  They actually both practice with Allergy Partners Group.  

I feel such a sense of relief that this is not all on me and me alone now!

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Joan
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Re: Columbia, SC Allergist
Reply #4 - 06/21/16 at 19:01:44
 
This sounds like good news!  I've heard of Dr. Lichtenberger.  Good for you for being pro-active and to continue to pursue a diagnosis!  Hope things will move forward smoothly now.
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Julie M.
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Re: Columbia, SC Allergist
Reply #5 - 06/29/16 at 03:29:18
 
Glad to hear the promising news Cindy!  

Keep us posted on your journey to diagnosis.

Best regards,

Julie
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CindyP
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Re: Columbia, SC Allergist
Reply #6 - 10/27/16 at 05:38:22
 
Dr. Lichtenberger ordered ultrasound of my most painful area (back of left knee) at the time I saw him.  It was normal.

He had me do a chicken and rice elimination diet to identify hidden triggers.  No change in symptoms 10 days into the diet, so he told me to resume previous diet.  (Gluten free/low salicylate)

Today I found out results from MRI of my left knee is also normal and that Dr. Lichtenberger has nothing more to offer me.  The burden is back on me.
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Rick
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Re: Columbia, SC Allergist
Reply #7 - 11/11/16 at 14:15:13
 
Hello Cindy - I was diagnosed with MCAD by Dr Afrin about 4 years ago. I saw him for a couple of years and tried several different drugs. I liked Dr Afrin however he left to MUSC and moved to Minnesota. To far for me to commute. I live in North Georgia.

I looked around and found Dr. Tanna in Gainesville, Ga. She is an oncologist/hematologist who had no previous mast cell patients, however I found her to be intelligent and willing to learn. She contacted Dr Afrin and discussed my case. Dr Tanna is treating me using Dr Afrin as a consultant. I will be soon  trying Sprycel after being unable to tolerate Gleevec.

Wish you luck.
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CindyP
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Re: Columbia, SC Allergist
Reply #8 - 11/15/16 at 09:38:33
 
Rick,

Thank you so much for your input.  I'm still searching for a doctor.  How did you come to find Dr. Tanna?  I figure the only way I'll find a "local" doctor is to just keep calling every hematologist until someone agrees to see me.  Going the route of allergists sure hasn't worked out for me.  That was my GP's idea.

Correct me if I'm wrong, but I think I'm at a disadvantage because I don't have a diagnosis yet.  It seems I'll have to travel to an MC specialist to get the dx and then have a local doctor willing to work with them.  I can't see a doctor giving a dx that they aren't familiar with.  

I hope the Sprycel will be helpful to you.  I'd love to hear your story from the beginning and how you got to where you are now.  

Wishing you well...
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Rick
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Re: Columbia, SC Allergist
Reply #9 - 07/04/17 at 06:47:46
 
Hi Cindy - I was on Sprycel for about 4 months, 3 at 20mg and 1 at 40mg.
At 40mg some of my symptoms subsided but my tolerance of the drug decreased until I decided to quit. Once the drug was eliminated from my system I coasted for a couple months feeling better, but that wore off and I am back to where I was. My story is a long one, so I'll save the details for another time. I was pretty sure I had a mast cell disease for many years before being dx by Dr. Afrin. I found another Dr. by calling around, I wasn't specifically looking for a hematologist who treated MCAS but one who was interested enough to look at my case. I found Dr. Tanna and she contacted Dr Afrin. I have tried both Gleevec and Sprycel. Both help but my tolerance declines over time.

I contacted Dr. Afrin and he recommended a third drug Sunitinib, which is related to Sprycel so I will make an appointment with Dr. Tanna and give it a try. Also he told me about Tofacitinib which is a drug to treat Rheumatoid arthritis.

Best wishes,

Rick
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