Anyone in Delaware with MDS

[HughHC]

I live in Southern Delaware (Lewes) and currently see a hematologist at Johns Hopkins, That is a 2.5 hour drive from Lewes, I understand that there is a good Hematologist at Christiana Hospital. Anyone with knowledge of same, please share Also if you have know;edge of a good Hematologist in Salisbury MD, would appreciate. Thank you

[KellyDIL]

Hello Hugh,

My MIL was just diagnosed with severe AA. Although I don't have much info to offer you, I thought it would be good to get in touch with you to see if there are any similarities, etc. She lived in Bethany Beach, so not far! She is currently at GWU for ATG treatment (although I wish she had gone to Hopkins!) She is now in the ICU with pneumonia, but slowly getting better. She and her husband haven't been home for 2 months. She had a seizure while they were at a wedding in Virginia (the weekend of the big hurricane in August!) So thank goodness she was not in Bethany or she probably would have died! I think it is great that you are traveling to Hopkins although that drive must be hard. I hope you have some support from family and/or friends. My MIL is about 65 and has been living in Bethany full time for about 8 years. However, she lived in BB during the summer months for the past 35 or so years. She does not know the cause yet of her AA. Do you know what might have caused your MDS? I am concerned she might actually have MDS and not AA, but hopefully the MD made the correct diagnosis. I hope the treatments are going well for you and perhaps we can keep in touch to pass information to each other? I read about a great MD at Hopkins who helped completely cure some people of AA with the use of Cyclophosphamide I believe. What doctor are you using? With diseases as rare as AA and MDS I feel like it might be worth that extra hassle of going to Hopkins or GWU, as I haven't seen the best healthcare in Delaware (I've lived over there for the past 3 years, but now moved to Charlottesville). Take care!

Kelly

[HughHC]

Kelly

I agree with you as to the level of medical expertise in Southern Delaware and may even feel stronger about the matter. I even had a Board certified Internist attempt to sell me Herbal Life as a remedy for a medical condition. (I found a new Dr.)

My low blood counts began to show up approximately eight years ago. They were not abnormally low and have remained within a range for the last eight years. I am not on any of the meds for MDS at this time and my major symptom is fatigue.

I regularly see a hematologist at Hopkins by the name of Moliterno. I have been under her care during the eight year period. She is conservative and in fact I insisted two years ago that we delve into this further. She then ordered the bone marrow and bone biopsy tests which confirmed the MDS diagnosis. SHe then referred me to a Dr. Steven Gore who is on staff at Hopkins. He is prominent in the MDS field.

The day that I saw Dr. Gore my hemoglobin result was a 14.0. This was the only time in eight years that it has reflected such a high number. Although my WBC and Platelets were below the norms, he felt that I did not need to undergo any of the current treatments for MDS unless my numbers begin to drop.

I understand that there is also a hematologist at Christiana Hospital that is excellent but I do not recall his name.

I do not have a definitive cause for my MDS although I have some suspicions. At one time I worked for GAF and my office was in the same building as the R&D lab. There was a time when there were strange odors in my office area. I do not know what they were nor was anyone able or willing to tell me.

Another possibility was at another job wher my office was next to a room that contained an electric transfdormer. I discovered this when my computer began to be severely affected by the transformer. ( What did it do to my body?)

I also was a heavy smoker of unfiltered cigarettes for 30 years.

I have no idea of what may have caused my MDS but I do have it and do deal with it. My best wishes for your Mother-in-law and her dealing with AA.
I think that she is smart to seek medical help outside of LSD as good care is scarce in the area.

[RVgrandmom]

Unfortunately, he passed away last April, but we went to Hopkins from July '10 to Mar. "11. Perhaps, I can offer some information.

I am new to this site and haven't communicated with anyone. Do you just post for all to see or can you communicate privately? I would be happy to speak with you on the phone also. gloria

Originally Posted by HughHC

I live in Southern Delaware (Lewes) and currently see a hematologist at Johns Hopkins, That is a 2.5 hour drive from Lewes, I understand that there is a good Hematologist at Christiana Hospital. Anyone with knowledge of same, please share Also if you have know;edge of a good Hematologist in Salisbury MD, would appreciate. Thank you

[Neil Cuadra]

Originally Posted by RVgrandmom

I am new to this site and haven't communicated with anyone. Do you just post for all to see or can you communicate privately? I would be happy to speak with you on the phone also. gloria

Hi RVgrandmom. I'm sorry you lost your husband. It's very generous of you to offer your help to others.

You can post here in the public forums to share information with everyone who it might benefit, or you can use Private Messages or even email to talk one-on-one to another forum member privately. See Member-to-member Communications in the FAQ for details.