Guest guest Posted April 27, 2004 Report Share Posted April 27, 2004 Does anyone / their child see Dr. Gropman in DC? Is she hard to get an appointment with? I have read the transcripts at MDA and feel that she seems knowledgeable, but would like some feedback from those who have dealt with her personally. Thank you. AnnMarie- Complex IV Married to my best friend Rick, mom of (14), (11), Cassandra(6) and Joe(4) - complex IV, lactic acidosis, CP, tethered chord syndrome, dysautonomia, and a smile that never quits :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2004 Report Share Posted April 27, 2004 hi annmarie, we have not seen dr. gropman, but thought if you were looking specifically in the dc area, i would throw out another doctor. we saw dr. carol greene at children's hospital and we really liked her. she was very personable and concerned about making sure our " entire " family's needs were being met. bethany mom to brennan 7, palmer & anna grace (leighs) 4 > Does anyone / their child see Dr. Gropman in DC? > Is she hard to get an appointment with? > I have read the transcripts at MDA and feel that she > seems knowledgeable, but would like some feedback > from those who have dealt with her personally. > Thank you. > > AnnMarie- Complex IV > Married to my best friend Rick, mom of (14), (11), Cassandra(6) > and Joe(4) - complex IV, lactic acidosis, CP, tethered chord syndrome, > dysautonomia, and a smile that never quits :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2007 Report Share Posted January 14, 2007 Stu, We do have another member who is up in Seattle also. Hopefully Matt will come online and be able to help you find someone who knows this disease. You mentioned the nerve pain, the vertigo, the memory loss, the back and spine pain. First I'd see a Rheumatologist. They use more than prednisone to treat the sarcoidosis induced arthritis. since you've been on Pred for years, and your disease is progressing-- the pred needs to go and be replaced with Methotrexate, Plaquenil, or Imuran. It may be that you need to work up on one of more of these while you titrate off the prednisone. As you know-- you can not stop prednisone without a long slow taper. For the memory loss, Neuropsych testing can show that you have short-term memory loss, problem solving or multi-tasking loss, comprehension, etc. This along with Ct's, MRI's with/without contrast can really help get this diagnosis nailed down. Many times what is happening with NS is that we will have clear brain scans-- but all the symptoms. That is because we develop vasculitis, and if the vessels that are inflamed are pressing on areas of the brain-- then the area that is being impeded will not be able to function as it should. Because neuropsych testing (Q & A, personality profiles, puzzles, eye-hand, repetition of story, etc) -where each test requires a specific part of the brain to function-- when you flunk the test- they can tell if you have frontal lobe disruption or if it's speech or reading or whatever. The treatment is much the same, antidepressants to get the brain chemicals back into sync, and Plaquenil or MTX to bring down the inflammation. (It's amazing as much as it happens slowly, but if you stop the medication- you'll realize very quickly how much they helped.) Nerve pain can be from the inflammation, or it can be dehydration or high blood sugars. Since most of us have been on years of prednisone, the blood sugar issues can be huge in this regard. I've also found that MSM Powder (Puremsm.com) is a godsend. For me, it's brought my nerve pain down- that and I had to seriously address the sugar issues. MSM is a natural mineral that should be in our foods and enviroment, and has been engineered out. If your MD's say that there is nothing you can do-- it is time to find others that will research this disease, or will be open to the literature you bring in. The advances include treatment with different DMARDS-- Disease Modifying AntiRheumatic Drugs== the MTX, Imuran, Arava, etc and the new BRM's or Biologicals. These are Enbrel, Remicade, Humira and Cellcept. I personally am on Plaquenil, Methotrexate and Remicade. I have been able to get off my oxygen 24/7-- and some of my brain is back. I still can't work, as my exhaustion and fatigue will have me sleeping - which is a problem with all the immunosupressants, but at least I have parts of my life back. Whatever you do, start only one medication at a time. That way if you have side effects, you can tell what is causing the problem. I've found that Rheumatologists are the best direction to go, they seem to be up on the alternative anti-inflamatory drugs. For the drug info-- go to WWW.ARTHRITIS.ORG and the new issue Jan/Feb 2007 has a drug guide and it will explain the different meds, how they work, and potential side effects. FSR-- Foundation for Sarcoidosis Research https://stopsarcoidosis.org has a great Q & A and advice for the md's as well as a MD Locator. So that may also be an avenue for you. Dr. Om Sharma is on the BOD. and I had the opportunity to see him about 2 yrs ago when I was in a Remicade Clinical Trial in Los Angeles. Seattle also had 5 or 6 patients that were in the same trial- so someone there knows of it. I haven't been able to find the contact name but will continue to look for it. This disease is a tough one, but it can be controlled. If we can at least stop the progression--as of yet we don't have a cure- maybe they'll figure it out so that we can regain our health. Hopethis helps, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
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