Anyone in Upstate NY?

Discussion in 'Fibromyalgia Main Forum' started by fibrotina, Nov 4, 2005.

  1. fibrotina

    fibrotina New Member

    I live in the Rochester/Finger Lakes area and wonder if anyone here is near the same area. How have your
    doctor(s) been with your treatment? Did you find it difficult to find a doctor, or are you still searching? I'm stuck right now and would like to talk with someone in my area who may be able to help me out.

  2. redsox10

    redsox10 New Member

    I am in Rochester. What are you diagnosed with? We see Dr. Bell but now are in treatments for Lyme Disease. Where are you in Rochester?
  3. redsox10

    redsox10 New Member

    I was reading some of your posts. Have you been tested for Lyme by IGENEX?
  4. Des2nee

    Des2nee New Member

    Hi Fibrotina!

    Im not too far from you. Im in the Canandaigua area. I have to say I have been very lucky compared to others here as I now have a great team of doctors. Or at least the best I think Im going to find. I now only see a PMP, Pain Specialist, Psych. I only had to fire one primary doctor. My Rhematologist did basically nothing for me but the Fibro diagnosis and I no longer see her.

    I would be happy to give you their names although Im not sure you would want to drive at least 1/2 hour each way. (depending on where in Rochester you are) I know my pain doc has an office in Rochester.

    Im sorry you are having such a bad time of it. At least its been really nice out lately...but then again its Rochester...subject to change at any moment!

  5. malinta

    malinta New Member

    I am close to Rochester. I see Dr. Bell for treatment. What is your diagnosis? Mine is cfs/fibro.

  6. fibrotina

    fibrotina New Member

    I live in Newark, which is not heard of from most people that I have talked with, that is why I put Rochester/Finger Lakes area. Canandaigua is about 30 minutes away. I'd drive an hour if I had to!
    I was diagnosed with Fibromyalgia and CFS. I also have GERD, IBS, Multiple Chemical Sensitivity, Osteo Arthritis, degenerative C4 in spine, hypoglycemia, allergies, migraines, muscle spasms... the list can go on and on... as most of ours can.
    I believe I was tested for Lyme's but am not totally sure. I know I was tested for Lupus for sure. I'll have to find out about the Lymes.
    How did you get in to see Dr. Bell? What kind of Dr is he/she?

    Thank you all so much!
  7. redsox10

    redsox10 New Member

    Dr. Bell is in Lyndonville. If you google him you will find his website. He is a CFS specialsit. Put in David Bell cfs. Lyndonville is 45 minutes west of Rochester.

    If I were you I would rule out Lyme. Most test are inaccurate. You need a western blot done by IGENEX. With all yoursymptoms I would look at lyme. Check out lymenet and go to the forums for a ton of info. My daughter was diagnosed with CFS and now Lyme. SHe is responding to Lyme treatment.

    Anyone that has a good PCP in thie Rochester area let me know. My son is in need of one. He was just diagnosed with neurolyme.

    Good luck!!
  8. Aberlaine

    Aberlaine Member

    I'm from a small town near Elmira, called Horseheads. I was diagnosed by a rheumatologist who practices in Ithaca. But he just diagnoses FM, doesn't treat it. My PCP is doing her best to understand this disease, but I'm mostly doing the research myself. At least she's willing to discuss what I find.

    The nearest rheumy to where I live would be in Binghamton, but I'm not crazy about driving 1 1/2 hours for a doctor's appointment, so I haven't called any. And I'm not sure if a rheumatologist could do much better than my PCP is doing. Once we get this diagnosis, it's just a matter of dealing with the symptoms (through meds or non-med procedures) and adjusting our lifestyles to avoid flares.
  9. tandy

    tandy New Member

    another from the area!!
    I'm near Oneida NY,.... not too far from all.
    Syracuse is nearby. On good days (about 2 times a yr)
    I go to a few of the malls.
    There are a few decent drs. around that treat Fibro and CF.
    Myself,...I go to a Rheumy in Utica. A dr. Morrell.
    He does'nt specialize in these illnesses but he's a caring dr.and willing to listen and try newer meds and such. which is more than I can say for other 4 drs. that I've dealt with before this one.
    Nice meeting you~
    PS. Yes,'nt our weather great!? I'm lovin this!
    but I'm afraid its just about over :)
    we might be digging out next week!
  10. grandmasheri

    grandmasheri New Member

    Hi.. Dr. Sandy Sorentino is awsome. His nurse practioner is even better! very understanding about fibro. They are across the street from Park ridge hospital. They do not take medicaid.
  11. redsox10

    redsox10 New Member

    Thank you for the doc info. Is he understanding and a believer of your illness? I wonder how he would be with Lyme support. I am not far from Parkridge. Thank so much!!
  12. Des2nee

    Des2nee New Member

    It might have been nice if I had told you WHO I see in Canandaigua!! Newark isnt that far at all.

    My primary doctor is Leslie Myers DO, she is with the Canandaigua Medical group located across the street from Thompson Hospital. I have never had a problem with any of the staff, getting referals or waiting. Shes really nice and listens to my whining all the time. However she doesnt really treat my fibro as my pain doctor is the one who gives me the pain meds, TP injections and so on. Butus he always wants to know what he is doing.

    The Pain Specialist I see is Dr. Donovan Holder. He has a office in Clifton Spring right off rt. 96 by that little super market. He seems to have no problem when it comes to narcotics as long as you have tried other non-narcotics first. Just be sure to tell them that you ONLY want to see Dr Holder. I found nothing good in his assistants personality.

    They both take Medicaid.

    Let me know if I can be of any other help. I try to read the board everry day. I know we are not allowed to post emails here so just get my attention :D

    [This Message was Edited on 11/06/2005]
  13. grandmasheri

    grandmasheri New Member

    hi again.. Dr Sorentino and his practioner BJ Canaway are 100% beleivers of fibro. i had never heard of fibro until i was diagnosed, i asked if it was fatal ans BJ said no but there would be days that i wished it were. how right she was!!! they are willing to try anything to help, and will refer you to alternative methods even if your willing to try! good luck and god bless Sheri
  14. fibrotina

    fibrotina New Member

    Are any of you working? I think each of us has the DD to different degrees. I haven't had any luck with pain mangement since I got this DD in 1999. I haven't worked since then either. My PCP is an internest but I feel he really isn't doing much for me... don't get me wrong he is very compasionate, but won't prescribe anything more than anti depressant, muscle relaxer and ibuprophen. I'd love to find a doctor who can help me at least get to where I am able to control the pain to some degree. Advil does nothing for the pain. I worry that I will mess up my disability if I switch doctors and such. It was a long process to get it! I'd love to be able to work ... even part time if I can!! So what has the doctors you mentioned done for you??

    Sorry if this doesn't make that much sense... fibro fog bad today.

  15. fibrotina

    fibrotina New Member

    bumping back to the top
  16. Des2nee

    Des2nee New Member

    Dr Holder takes care of all my narcotic pain meds, TP injections, anything pain related. MRIs, xrays and the like.

    Dr Myers takes care of the rest. She has no problem sending me out for testing on whatever problem Im having. Seems everytime I see her, every three months, she is sending me for something!

    I think you also asked if anyone was working?. I havent worked since 8/2003 and just won my disability in Oct after first being denied. I was told today by SSA my big check should be here tomorrow. According to the ruling paperwork I won based on my Psych doctors report, pain = depression = pain = depression and so on, and Dr Holders reports with Dr Myers supporting my other health issues.

    I dont know what else I can tell you other than take the suggestions for doctors made here and see if any are right for you. For me...Im happy with mine right now and have been for about 1 1/2 years.

    I wish you the best. I know how it feels to not get out of your doctor what you feel you need. I wish you the best in your search and I hope for you its an easy one.

  17. grandmasheri

    grandmasheri New Member

    Des.. sounds like we were both hit with this DD about the same time, although my research has shown that i have had it most of my life, it realy hit hard in 2003. I just got my "big check" last month, such as it was lol. they actuly told me if i had any of it left in 6 months my monthly alowence would be cut.!!!

    tina.. Dr S, will work with all kinds of drugs, narcotic or otherwise and will keep trying untill they get it right for you. i also went for mri, cat scans, warm water therapy, chiropracter, biofeedback. unfourtunatly he doesn't take medicaid so i am now looking for a new dr myself. having trouble geting drugs i use to take that helped even a little bit.

    good luck to you god bless Sheri
  18. suzetal

    suzetal New Member

    May be you all should were a red carnation .And if you can all meet at a mall.

    I live in RI and would love to meet others with this DD.So we could have coffee and talk compare notes and so on.

    Sry I butted in
    Take care all

  19. foxglove9922

    foxglove9922 New Member

    Good question. I live in Syracuse, NY and have yet to find a physician with a clue about CFS. Seems this town has more docs with understanding of FM than CFS.

    I travel to Manhattan to see Dr. Derek Enlander. I was blown away by the cost of my bus ticket this time. It went from $78.00 round trip to $118.00....rising cost of gas?

    best wishes........foxglove
  20. grandmasheri

    grandmasheri New Member

    great idea Suz! I'm in North Greece you guys!

    God Bless! Sheri

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