Just curious as to who everyone sees for their Wegener's. I have a Rheumatologist and 3 different Dr's at an Ear Nose and Throat Practice for each of those areas - Ear, Sinus and Throat. Do you all have multiple Dr's, or just see one?
Thanks
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Just curious as to who everyone sees for their Wegener's. I have a Rheumatologist and 3 different Dr's at an Ear Nose and Throat Practice for each of those areas - Ear, Sinus and Throat. Do you all have multiple Dr's, or just see one?
Thanks
I have a rheumy, 1 ent ,a kidney dr, a cardiologist, a optomalogist, a dermatalogist, my pcp, a gastrologist (spelling on all these ) I think thats all !!
I have a PCP, pulmonologist, rheumy, neurologist, and ent.
My Wegs doc is a Nephrologist. My lung doc is a Pulmonologist. My ENT is an Otorhinolaryngologist. My eye doc is an Ophthalmologist, specializes in retina.
Rheumy, Pulmy, ENT, and PCP is in on it as well.
My rheumatologist manages the treatment of my wegs. I also have a very good PCP. In addition, I see a pulmonologist and an ENT on a regular basis. I see a nephrologist and a urologist as needed.
Primary Care, Rheumatologist, ENT, Pulmonologist, Hematologist/Oncologist, Dermatologist, Opthamologist, Endocrinologist and Neurologist ... for now. I'd like to not add anymore of those, thanks.
My Rheumatologist manages my meds. I also see an Otolaryngologist who updates the Rheumy on my symptoms. Recently as a result of an infection over the holidays, I was also seeing an Infectious Diseases doctor. Besides those, just a family physician. I guess I'm lucky, I only have a few doctors.
Nikki wins, she's got more than any of us!! Hmmm, now for a dubious prize!!! LOL!
Man, how did I end up with more?! I'm not as severe as others!!! I do have Hashimoto's so there's the endo doc ... and the cancer gives me the oncologist. And ... I have a pituitary tumor and a pupil that's smaller than the other one ... hence the brain doc.
OK, now I sound like a mess.
You're no more a mess than the rest of us...just maybe a more interesting puzzle...hehe.
I fall right there with Nikki minus the NEUROLIGIST. I have a primary for things like if I get an injury otherwise known as the family Dr and an internist who is also the Dr on my team is a Nephroligist as well as she now regulates my insulin and is the point person when the other Drs make a change to my treatment. I guess you could call her the team captain. I also have a cardiology check up every 6 months. Im sick of Dr's and sick of pills.
I'll chime in too. Rheumatologist, who has become my PCP. ENT for sinus, pulminologist for lungs, and a PA in the surgery department at the clinic who also has wegs (I call him not very frequently, unless I have to)
I have a rheumatogist, a team of nephrologists, 2 separate pulmonologists, a neurologist, a cardiologist, an ent, a opthomologist and a primary care doc, (oh and now I have a orthopedist, since I broke my leg!)
I hate to even try think about how many doctors and clinics I try help support. I know I see several doctors at five different clinics. It is not the best way to coordinate my care but to find experts I like and trust for my care it was necessary to do so. I try get as much care as I can close to home to minimize my driving and medical travels. So my local internist prescribes most of my meds I get at local Walgreens. My treating doctor for prescribing my Weg treatment is rhumatology (200 miles), his consultant at Mayo (275 miles) that I see is pulmonary. At the clinic I go to see my Wegs doctor I also see urology, hematology, endocrinology, and ENT when they or I think it is needed. Closer to home at a local clinic (2 blocks) or at two other clinics an hour (60 miles) awayI also see doctors for urology, endocrinology, oncology, 2 dermatologists, podiatrists, two ophthalmologists, mental health as needed, ENT, pulmonary, and probably others I can't recall. At my local clinic and hospital I have also used pulmonary rehab, respiratory, and vestibular rehab therapists and I see the respiratory therapist monthly for pentamadine nebulizer treatment which I had today.
It is a rare week when I don't have one or two medical appointments. I often feel like an antique classic car that spends as much time in the garage as it does on the road although I do drive thousands of miles each year for my medical appointments. When people ask me what i do now after retirement I tell them I became a full time health care consumer trying to help support a dozen plus doctors at five clinics. I am one of the best customers at pharmacy and usually see them weekly for some refill.
Some times I find my health care routine rather tiring but I know it beats being inpatient at any hospital or nursing home so I am glad I can still do it and hope to keep it up for many more years.
Drz,
I think us weggies have a duty to keep the economy stimulated through consumption of medical services. :-)
Hi Mary, I am sorry for you. I hope you will recover soon. hugs :hug1:Quote:
Originally Posted by marylz
my list of docs:
some of them I visit at the clinics of my health service, and to some I am going on a private basis and paying good price.
GP (at my health service)
Rheumy - wg doc (private, but since I am rare case, he doesnt take much relativley from me), another rheumy on private basis - to prepare my case for getting disablilty.
lung doc (at my health service)
Ent -2 : 1. local (at my health service, for "small things", "everyday" issues). he doesnt understand much. 2. expert - private - once a year, I need to travel away to him and to pay him very well.
eye doc: 1. local at my health service. 2. private, expert, once a year, again, I need to travel and pay.
neurologist: at my health service.
gastro doc (since I have colon involvement): one private. about 3 times a year. the gastro docs at the health service were both arrogant and ignorant.
PCP, 2 rhumeies, 1 endo, dermatologist, gastrologist, neurologist, and ENT.
What a group we are!!
My least favorite Dr. on my team is my ENT. He likes to stick that tube in my nose and starts to vac my sinus'.
Even before I was dx'ed and was having all the sinus issues, my ENT did surgery to open all the channels in my sinuses. I thank him every day when I notice I'm actually breathing through my nose. One of the most worthwhile ops I've had.
Quote:
Originally Posted by Tom
I hate that part! It's the worst!
My FAVORITE doc is the ENT, because he does a thorough cleaning of the sinuses every two weeks. When I leave there, I do have some discomfort for the rest of the day and into the evening, but the lasting effects of the cleaning far outweigh the discomfort. I have an extremely high pain tolerance, so to me, it's nothing anymore to have him spend 20-30 minutes in my sinuses with the suction and forceps cleaning out the crusting.Quote:
Originally Posted by Tom
To each his/her own, I guess! (-8
Phil
In seeing your Ophthalmologist did he have any experience with WG? I am concerned about my eyes being blurred, subject to bright lights, floaters, and streaks of light. I went to an ophthalmologist before I knew that I have WG and he said the floaters were high protein levels. My RM wants me to go to Cincinnati Eye Inst. to have it checked out. Do you think I should ask if any of the dr's know about this disease before I make an apt.? I am sure there is as I don't think my RM doc. would recommend it. Can you give me some feed back on your experience?
Thank you and lets fight WG
John
John
A couple Ophthalmologists I have seen have a few other Wegs patients but would not be considered experts because Wegs involvement with the eye is very rare.
I would maybe see if you can get into see one at Cleveland Clinic that could be recommended by someone like Dr. Langford.
The reason I started seeing the one I see now is because my retina was bleeding. He is a retina specialist. So when my gets bad I get injections of a cancer drug called Avastin into it.
They will usually do some scans and pictures of your eye. If he is a retinal specialist then they will have a retinal scanner. But usually there are not many retinal specialists out there.
I have a pulmonary doc and an oncologist for my treatment. I did see an ENT and an infectious disease doc for a checkup but don't have to see them again unless something comes up!