Hello all! I am looking for a reccomendation for a Doctor in the Fort Meyers/Naples area. I was diagnosised in 2010 in Tampa after a major attack. I also went to Mayo clinic for further confirmation of the diagnosis. A couple of years ago we relocated to Kentucky for job transfer. Now that my husband has taken a new position we are returning to Florida. We are moving to a different city this time so I need a new doctor. My last doctor in Florida was a God send but het has left his private practice to teach and work for the VA. I am currently receiving IVIG. Does anyone know of a good doctor in the Ft. Myers /Naples area? I appreciate any help. Thank you so very much Shannon

While I don't have a name, I have a method to suggest: Look for a seasoned internal-medicine physician on the faculty of a university-affiliated or large trauma-center hospital, in your case Lee Memorial Hospital. Within its Primary Care team, the Lee Physicians Group has about 20 internists to choose from. It doesn’t matter that he or she may not have even heard of SCLS before: by now there is plenty of useful literature, see the Disorder Resources section of this website. Encourage him/her to contact Dr. Druey at NIH for any advice on how to treat you, especially in case you ever have an episode again.

Arturo's suggestion is spot on. I would only add that, if the internist[s] are timid about overseeing the IVIG infusions, they are likely to be willing to make a referral to a hematologist/oncologist. Best of luck with your move and your creation of a supportive medical team. Susan

I worked for years on SCLS before retiring from Mayo Clinic in 2011. I am most familiar with SCLS having worked with Dr Kapoor who remains at Mayo as well as Dr Druey at NIH and Arturo. I live near Naples in Estero, FL and would be happy to talk with you and offer whatever help I might. Dr Philip Greipp

Dr. Greipp, I am very gratified to know that you are in Florida. I read your studies and viewed your SCLS video abstract on my journey to identify Dr. Druey at NIH and Dr. Candido Rivera at Mayo Clinic Jacksonville, who had seen a case prior to mine.. I am now on IViGG q 28 days through a clinic in Ocala, Florida. It has brought great improvement in my quality of life, though at a cost of five days of moderate-severe side effects post-infusion. Your comments on management of side effects would be most appreciated. Again, thank you for your ground-breaking research in SCLS and I wish you all the best in your retirement. Susan Tedrick

Susan, I can't make specific recommendations since I am retired however most of the information suggests slowing the rate of infusion if you have side effects. Have you asked your doctor what to do? What are your side effects. Others on this forum may have had similar experiences and offer advice. Dr Phil Greipp

Dr. Greipp, I also have side effects for six to seven days after my infusion which I get every 28 days. My infusion rate is 4 1/2 to five hours each day for two days. I only sleep for 2 to 2/12 hours the first two days after my infusion then I may sleep all day on the fourth day.. My system gets all messed up. I don't drink much and then start drinking on day four almost as if I am going into dehydration. I see Dr. Mark Pecker in New York and have been on IGG for four years. My infusion is administered by Dr. Sharma who is a onocologist/hematologist. She tells me the sleep timing is from my premeds prior to IGG. Charles

Dr Sharma is probably right. It's good you've had no more SCLS attacks. Probably should stay the course. You have a great medical team.

Dr. Gripping Thank you for replying to my post!! I would love to speak with you about a few things. Just to get your insight. I am on ivig however I have not had it for 3 months due to my move and Dr office being being backed up with appointments. I made my appt 2 months before I moved for this month. Thankfully I have only had 2 small crisis. Nothing like was having prior to starting ivig. My email is shannon -c-dowell at gmail-dot-com without the dases. Also Susan you are not far from me what doctors are you seeing? Shannon

Shannoncourt, I am receiving infusions from Anju Vasudevan, MD in Ocala, FL and was also evaluated by Candido Rivera, MD at Mayo Clinic Jacksonville, FL.. I can be reached at stedrick@centurylink.net. Best of luck, Susan