Angelaintexas Posted January 30, 2013 Report Share Posted January 30, 2013 Hey y'all. I have an appointment with Dr Suleman in Dallas TX tomorrow. Has anyone been to him. What do you think?!! Quote Link to comment Share on other sites More sharing options...
corina Posted January 30, 2013 Report Share Posted January 30, 2013 As I'm in Europe so haven't seen this doc but wanted to wish you good luck and hope you will get the answers you need! Quote Link to comment Share on other sites More sharing options...
misstraci Posted January 30, 2013 Report Share Posted January 30, 2013 Good luck, I haven't been to him (I'm in Atlanta) but let us know how your appointment goes! Quote Link to comment Share on other sites More sharing options...
roxie Posted January 30, 2013 Report Share Posted January 30, 2013 I see him! He's the best I have seen . Very thorough with testing. Good luck and let us know how it goes. Quote Link to comment Share on other sites More sharing options...
Angelaintexas Posted January 30, 2013 Author Report Share Posted January 30, 2013 Thanks so much y'all! I'm about to go in, I'll keep y'all updated Quote Link to comment Share on other sites More sharing options...
roxie Posted January 30, 2013 Report Share Posted January 30, 2013 Be prepared to spend time waiting. Quote Link to comment Share on other sites More sharing options...
Angelaintexas Posted January 31, 2013 Author Report Share Posted January 31, 2013 I agree he was VERY thorough, 13 tests in 3 days, gesh.... I'm already exhausted (( Quote Link to comment Share on other sites More sharing options...
Angelaintexas Posted January 31, 2013 Author Report Share Posted January 31, 2013 BUT he is making me re do all of my tests... Even though I have my medical records and all the tests have been in the last year. Hope my insurance is ok with this. Quote Link to comment Share on other sites More sharing options...
JenLR Posted January 31, 2013 Report Share Posted January 31, 2013 I went to him once and would not go back. I decided it was worth continuing to drive 14 hours to see Dr. Grubb instead. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted January 31, 2013 Report Share Posted January 31, 2013 Good luck and I hope you find some answers!I went to him a few years ago, and I agree that he is VERY thorough in testing. But, he didn't have any answers for me on how to treat. He wanted me to take Clonidine, but it immediately made me feel worse. Because of that, he had no other treatment plan for me. I've had local doctors want to try blockers on me, so I felt like the treatment aspect of his visit was extremely lacking. Quote Link to comment Share on other sites More sharing options...
roxie Posted January 31, 2013 Report Share Posted January 31, 2013 @Angela- he made me re-do everything as well, he wants to see things for himself. He's made me re-do test throughout this year as well. @JenLR- did you get int Dr Grubb? Was he able to give you more guidance? Quote Link to comment Share on other sites More sharing options...
JenLR Posted February 6, 2013 Report Share Posted February 6, 2013 I've been seeing Dr. Grubb for about 2 1/2 years now. He is by far the most knowledgeable POTS specialist that I have seen, and I have been to a lot of them. He always has a lot of treatment suggestions for me, which is great. The problem is that a lot of the drugs that I have tried have not been helpful for me. So, it can be very frustrating to go to so much trouble to travel to see him and then end up taking a medicine that makes me really sick. I can't really say that I've seen a lot of improvement with my POTS, but I still have 100% faith that if any doctor can help me, it will be him. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted February 6, 2013 Report Share Posted February 6, 2013 Hi, JenI saw Grubb too. I liked him, just to far away to keep going. Just curious what did he diagnosis and treat you with so far? When I arrived on his door step, we already knew my bp went up not just my heart rate and I also had just come back with positive skin biopsy for small fiber neuropathy. My neuro wanted to go ahead and treat me with treatments targeting autoimmunity. I had also had a history of elevated ana and suspected autoimmune issues.He did agree with those findings and said that they may not be able to find the antibody cause yet as Mayo was continuing to find new ones. He ordered the supine/standing catecholamines which confirmed his diagnosis of hyperpots. He put me on labetalol as I also got hypo/brady when supine. It does help, but my other treatments for underlyers has also improved things as well Quote Link to comment Share on other sites More sharing options...
corina Posted February 6, 2013 Report Share Posted February 6, 2013 Sorry, off topic. Arizona girl is there something on paper about the antibodies Mayo is finding? I'm really interested in it!Hope your testing is going well Angela! Quote Link to comment Share on other sites More sharing options...
arizona girl Posted February 7, 2013 Report Share Posted February 7, 2013 Corina, You can actually go to mayo's lab test site and they talk about it there. Oh I forget what the panel is called, something like autonomic antibodies or dysautonomia antibodies. Some of the newer found ones probably aren't on it yet, due to being at a research phase. I think some of them are the pandy ones. If you have them they are treating with ivig or pheresis. I'm sorry for the brain fart. It will probably come to me.Anyway else that went to mayo remember the panel name? Quote Link to comment Share on other sites More sharing options...
roxie Posted February 7, 2013 Report Share Posted February 7, 2013 Is this it?http://www.mayomedicallaboratories.com/articles/hottopics/transcripts/2011/02-auto-dys-eval/13.htmlI'd like to go to Dr Grubb but he is SO far away and I don't know if there's other treatments than DrS has tor me? I would like to find out if I do have hyperpots or not. I seem to be on the edge of it Quote Link to comment Share on other sites More sharing options...
arizona girl Posted February 7, 2013 Report Share Posted February 7, 2013 Thanks banana, that is it. My neuro did some of them, as I recognize them. The hu one was scary. I haven't had all of them listed there done though. Hmmm makes me wonder if I have one of the ones that I didn't get tested for. We know because of my response to pheresis and then ivig that what ever it is is autoimmune, thus the undeferentiated connective tissue diagnosis. Quote Link to comment Share on other sites More sharing options...
corina Posted February 7, 2013 Report Share Posted February 7, 2013 Thanks everyone! (Bananas I merged your posts) Quote Link to comment Share on other sites More sharing options...
Trach Posted February 22, 2013 Report Share Posted February 22, 2013 I have mixed emotions about Dr. Suleman. While I believe he is a caring doctor and I especially liked his support staff, I must have seen him during the height of his expansion. I received a POTS/NCS diagnosis, but had difficulty with physical therapy when I kept having migraines. Although Dr. Suleman said he would contact my neurologist in Houston, he never called after repeated attempts by me and my neuro. So I was the one who figured out midodrine and florinef were the cause of two hospital visits. Then I ended up diagnosing myself with EDS one year after I had made three 3 trips to Suleman's office for joint/arm/leg pain. I scored 9/9 on on Beighton's test when Dr. Dhar examined me. However, I saw Dr. Suleman right after his new office was opening. Since then he has diagnosed numerous patients with EDS and many people have been pleased with him. So, I believed I caught him during a bad time. He does have an extensive testing facility and is very knowledgable about autonomic dysfunction. His physical therapist and other staff members were great. Dr. Suleman was just stretched too thin at the time. Quote Link to comment Share on other sites More sharing options...
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