need a good place/doc for diagnosis

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moedon1
Regular Member


Date Joined Jun 2005
Total Posts : 139
   Posted 6/24/2010 2:10 PM (GMT -7)   
I need assistance.  I've been circling through the Boston medical fascilities for 5 years.  I have multiple issues.  Crohn's, IBS, Chronic inflamation, Epilepsy, Diabetes II, Sleep Apnea, Neuropathy, and Post Herpetic  Neuropathic abdominal pain, Oral Herpes, Chronic thrush, Hypertension, Severe Degenerative Arthritis of the ankles and back, Tarsal Tunnel, Plantar fasciitis, heel spurs, etc, ect, ect.  I take a boat load of meds.  I was just referred to Mayo and they rejected me..."we wouldn't offer anything that you haven't had".  What I would like is for someone to take all of my medical issues into account and try to deduce some kind of plan instead of adding more meds.  I know that some of these meds are causing some of the newer issues(prednisone ie diabetes and hypertension).
I know I am looking for a miracle but is there anyone out there who knows of a place or Doctor who might be able to help.  I have been medically disabled for 5 years and just feel as though I'm on a slow downward spiral.  I'm only 48.  Any information would be greatly appreciated!
Donna
 Formal diagnosis 3/2006, IBS 1992, Degenerative Arthritis Facet block and RFA, Seizure Disorder, Severe Carpal Tunnel both hands, SVT arrythmia, 2004 cardiac Ablation
Cushings Syndrome(thanks Prednisone), Asthma, Multiple Laps for ovarian adhesion to bowel, C/5 & 6 disc herniation - plate with screws, resistant to anethesia/most pain meds.  Chronic fungal infections.
Multitude of Meds. Have tried most Crohn's meds.  Gall bladder removal and Intestinal Lap. June 08.- Intestinal blockage July 08 moved on from on Humira..now on Cimzia. .Off the Cimzia 7/8/09.  Back on Humira.  Systemic fungal infection.  Waiting on Liver Biopsy & Hepatitis results.


RedSoxGirl85
Regular Member


Date Joined Jun 2010
Total Posts : 265
   Posted 6/24/2010 4:39 PM (GMT -7)   
I've been going to Tufts Medical Center in Boston and have great help at the GI Dept there. Where have you tried in Boston? I went to Boston Medical Center and wasn't a fan of the staff there at all. I would highly recommend Tufts if you haven't tried them yet. Also have heard great things about Mass General and their GI Dept. Heard they work with many doctors at the hospital in other depts to get you the best treatment. But I highly recommend Tufts. Are you from the Boston area or just travel to Boston to get the care?
RedSoxGirl85
50mg 6MP
10mg Prednisone
1000mg Sulfasalazine 3x Daily
50000IU Vitamin D Once a Week
100MCG/ML INJ, 1ML Cyanocobalamin B12 Every 3 Weeks
 


moedon1
Regular Member


Date Joined Jun 2005
Total Posts : 139
   Posted 6/24/2010 6:00 PM (GMT -7)   
Born and raised in Boston/currently living in Woburn. 7 miles away. MGH was a;ways the hospital that I used when I was younger. I stopped going there when they really ramped up their additions(not that they ever stop). I have been through the Longwood/Brookline Ave biggies, Brigham, BI, Baptist, Deaconess before the merge. Then on to Mt. Auburn, Cambridge City, back into Boston. As I got sicker Dr's got pickier "I really don't think we could offer anything else..." I finally landed at Lahey Clinic hwere I have gotten excellent care and have a wonderful GI doc but once again we are perplexed as to how to move forward. New issues arise quicker then we can get a handle on the one before. Obviously not all life threatening but intense nonetheless. 4 hospitalizations in less than a year, a TB scare, Pneumonia, Neuropathic pain issues and a botched liver biopsy have me wondering if there isn't someone that can look at the whole picture. I don't travel very far and usually it's to the doctor. Driving into Boston and navigating MGH with active Crohn's is a bit frightening but I really do need to rethink it. I will also look into Tufts. Thanks for your help!
Donna
 Formal diagnosis 3/2006, IBS 1992, Degenerative Arthritis Facet block and RFA, Seizure Disorder, Severe Carpal Tunnel both hands, SVT arrythmia, 2004 cardiac Ablation
Cushings Syndrome(thanks Prednisone), Asthma, Multiple Laps for ovarian adhesion to bowel, C/5 & 6 disc herniation - plate with screws, resistant to anethesia/most pain meds.  Chronic fungal infections.
Multitude of Meds. Have tried most Crohn's meds.  Gall bladder removal and Intestinal Lap. June 08.- Intestinal blockage July 08 moved on from on Humira..now on Cimzia. .Off the Cimzia 7/8/09.  Back on Humira.  Systemic fungal infection.  Waiting on Liver Biopsy & Hepatitis results.


RedSoxGirl85
Regular Member


Date Joined Jun 2010
Total Posts : 265
   Posted 6/24/2010 6:17 PM (GMT -7)   
Best of luck to you Donna! I called Tufts and was able to see them less then 2 weeks from the date I called. Most places said 3-4 weeks or several months. I couldn't wait that long just wanted help ASAP. Seen several different doctors at Tufts and they've all been wonderful. They work together to get the job done. Good luck with everything!!
RedSoxGirl85
50mg 6MP
10mg Prednisone
1000mg Sulfasalazine 3x Daily
50000IU Vitamin D Once a Week
100MCG/ML INJ, 1ML Cyanocobalamin B12 Every 3 Weeks
 


cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 6/29/2010 2:12 PM (GMT -7)   
Mass Gen is a great hospital and that's the beauty of teaching hospitals - you get a team working together to solve the problem. I'm almost wondering if at this point you wouldn't benefit from seeing an internist as opposed to the GI or with the GI to coordinate all of these meds and your medical history. Some of your meds may indeed need to go as you mentioned in your post. Best of luck - it sounds like you've been through the wringer my dear!

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 6/29/2010 3:08 PM (GMT -7)   
I think you have gotten some excellent recommendations. I grew up about a mile and a half from Lahey and they are known as the place to go if no one else can figure things out. I see a doctor at BI once in a while just as a check in. He and my local doctor trained together, so they work well as a team. I have also seen someone at Mass General years ago.

Could you ask your doctor at Lahey to ask someone else in the hospital to step in and help out as a liaison to coordinate things, since you have so much going on. It seems to me that Lahey might really be the right place for you, but that your doctor might be overwhelmed, and you might just need a new chief in charge so to speak.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


Nate in NY
Regular Member


Date Joined Mar 2010
Total Posts : 66
   Posted 7/3/2010 9:18 AM (GMT -7)   
Dr. MacDermott at Albany Med knows his stuff.
Good luck.
Crohn's 5/10,Bilateral Uveitis
Sigmoid Colectomy x3 January 2009,loop Ileostomy reversed Memorial Day 2009,Gallbladder out the same time(Failed from TPN,or starvation!)
Psyllium and Flax seeds, Metamucil(not sugar free)PB-8 probiotic, omega 3 fish oil,folic acid, absolutely no Inulin or chicory root, lots of greens and raw sunflower seeds.

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