I live in New Jersey and have heard of an excellent specialist (Fibro, CFS) from my attorney. His name is Dr. Podell and he is located in Summit and Somerset, NJ. He, of course, does not take insurance and it is going to cost a fortune but my attorney told me that he is very well respected amongst lawyers and judges and it is in my best interest that I see him. My appt. is on the 11th and I am very anxious to see what he is going to recommend.
Has anybody here gone to this doctor? What was your experience? Has anybody gone to specialists like this in their state?
I have tried three rheumatologists, neurologist, chiropractors etc...and have gotten no where. The only person who knew about Fibro was my massage therapist and that is because she is a retired nurse and has attended many seminars to educate herself with this horrible condition.
I've never been back east, so I don't know about your doctor. But I go to a doctor like that in my state in AZ. He was originally a general primary doctor. Some 30 or more years ago now, before they had a name and all the changes to it he started seeing 12 to 15 patients with FM symptoms that no one was taking seriously and weren't getting any help. He did the best he could to work with them, read all the articles they brought in and then over the years dropped the general practice to specialize in CFS/FM (he also does weight lost working with people with diabetes & other problems that get in the way - here's his website if you want to check it out http://www.drscottrigden.com/). He's actually been on the front lines with research too, he has a friend or something in research and together they've done studies on FM. Finding things like most FM have a thyroid that's functioning just within the normal range, but that they improve when given replacement therapy to get it to a more optimal level. Or the severe deficiency of magnesium in our cells - we're supposed to have a magnesium inner lining to our cells. Most with FM have a calcium inner lining. He of course knows a lot more than I do and none of this is a cure, but every little bit helps. I think he's awesome to work with - the only one we could find that had positive recommendations in our state. I think it's because he LOVES what he does - he totally "geeks" out on it in his own way. I've not seen him in a while, but that's an insurance/money issue. On the down side usually a lot of what often adds greater benefit is outside insurance (largely because it's not pharmaceutical). My doc will prescribe things as needed, but with the immune issues, deficiency issues and all that go with FM a pill can't really "fix" those - though there is another portion if you will that insurance does cover, and he works with those options too. Pacing is one of his BIG things, learning to pace our lives and work within our bodies limitations. My husband found this site http://www.cfidsselfhelp.org/ and I'm taking the self-paced course to "get a plan" to get back on top of my health. It's a site specifically for people with CFS/FM. Thus far it's been awesome in giving me a kind of step-by-step way to approach my health problems and seeing what I can do to help myself.
I don't know if I've been of any help, but I hope you find some answers! I don't know if this doc will be like the one I go to, but I pray things work out. Maybe it's just me, but I think with the options you've had and if you can make the money work than go for it!! He's more likely to have better answers than the others you've tried.
Thank you Butterflydragon for the information. I will check out the sites!! I think the imp thing is that we each find what works best for us. Of course, money is a huge factor because most of the therapies are not covered by insurance! For those of us with no income or on disability money is extremely tight. I agree with you on pacing yourself during the day. When I feel decent and have energy I tend to overdo it and then the next day I pay for it and am in bed most of the day. This doctor I will be seeing next Monday definitely will have more answers for me then all the rest. The others, clearly, did not educate themselves with Fibro or CFS, I knew more about these conditions than they did!
Petunia Girl---Thank you so much about the info on Dr. Podell. I guess I will soon find out because my appt is this coming Monday. Thank God that my fiance is paying him because I do not have the money. The new patient information packet is 25 pages long! Very detailed! And yes, you need to send in a $150 deposit to hold the appt. Lets hope he is worth it!!