New Member Bio

[PANDASmomx2]

Hi all,

I was just diagnosed with Wegener's last week. I've been sick for years though and the past 5 months I've felt like I'm going to die. I had sinus surgery preceded by a Tetanus shot in January which seems to have set me into a severe flare. I have been on steroid bursts and antibiotics several times in the past, and can't wait to see my Rheumatologist this next week as I'm hoping for anything to help relieve these symptoms.

Other Diagnoses: CREST Syndrome (Calcinosis, Raynaud's, Esophageal Dysmotility, Sclerodactyly, and Telangiectasia) - which is basically a connective tissue disease, Sjogren's, Lupus, Chronic Kidney Disease (CKD Stage II), Irritable Bowel Syndrome (IBS), Interstitial Cystitis (IC), Temporomandibular Joint Disorder (TMJ), Insomnia, Arthritis (in several area including the spine), Allergies

Doctors Involved in Care: General Practitioner (GP), Rheumatologist, Integrative Medicine, Ears/Nose/Throat (ENT), Pulmonologist, Gastroenterologist (GI), Hematologist, Dermatologist, Cardiologist, Ophthalmologist, Endocrinologist, Gynecologist, Podiatrist, Oral Surgeon, Dentist, Psychiatrist, Psychologist, Physical Therapist

Current Symptoms: Severe sinus pain/pressure/bleeding, increased mucus production, ear pain/pressure and hearing loss, eye dryness/pain/pressure/blurriness, IBS-D, Neuropathy - numbness/tingling/burning of feet/legs/hands/arms, Joint pain and dislocation (hip, jaw, and shoulder), skin breaks open, low vitamin D, low vitamin B, swollen throat, swollen stomach, acid reflux, insomnia, severe fatigue, blood in urine (IC), hemorrhoids (thanks IBS-D), cough (productive sometimes), day chills/freezing, night sweats, headaches and migraines, wrist and ankle pain/leg and arm pain seems muscular, nausea, choking (especially on increased phlegm), small hiatal hernia, decreased libido, weight gain with inability to lose it, bleeding mouth sores and corners, intense breathing difficulty, vomiting, poor memory, unable to lay down or lean over due to sinus/ear pain/pressure, belly pain/bloating, pain when walking, laying, or sitting

Surgeries/Procedures: Sinus (polyps removed, deviated septum, turbinate reduction), Dental implants (multiple), Bladder distention and urethral dilations (multiple), full hysterectomy after multiple DNCs and ovarian cysts bursts, tissue infarction that caused gall bladder failure and removal, hemorrhoid banding multiple, tonsils and adenoids removed, allergy shots for about 5 years

Tests: Multiple blood, Upper and Lower GIs, X-rays, CT's, MRIs, Urograms

Medications and Over the Counters (OTCs): Estradiol, Allegra-D, Famotidine, Zyrtec, Montelukast, Fluticasone, Benadryl, Albuterol, QVAR, Clobetasol, Sustane, Tobradex, Lotemax, Pataday, Restasis, Paroex, Cyclobenzaprine, Azithromycin, Cipro, Metronidazole, Probiotic, Vitamin D, Vitamin C, B Complex, Multivitamin, Fish Oil

Other: Current diet FODMAP but have previously done Atkins. Previous history also includes severe C-DIFF, pneumonia, bronchial inclusion cyst, and tachycardia

I'm sure I've forgotten some things, but this is all I can think of now. I have to say I love the way this forum is set-up. I was able to find a doctor and get treatment for my childrens' rare autoimmune disease by using the Latitudes forums, but this GPA site is much more clean and well maintained, which makes navigation so much easier. Good job!

[Pete]

Hi Pandasmom,

All I can say is Wow!! What a list of ailments and meds!! Here's hoping you find competent treatment for a firm diagnosis. You may want to explore the possibility that you have more than one disease going on (I know, trying to figure out if you have just wegs is bad enough.). I hope your local doc's will consult with a Vasculitis specialist (list on Vasculitis Foundation website).

Glad you found us but sorry you needed to. Keep us informed about what's going on.

[Middlesista]

Yes!! Vasculitis specialist - once starting adequate treatment hopefully things will improve for you. You certainly have had a go of it! Stay strong and insist on the care you deserve! ��

[PANDASmomx2]

Yeah. My Rheumatologist claims to treat GPA but he didn't run the antibody tests for it at all, which is why I'm so frustrated. He's been treating me for the CREST and other autoimmune diseases for the past 10 years. I've had elevated WBC and deminished lung capacity of 60% for almost 7 years now. It wasn't until this "flare" and my sinus CT came back with extreme inflammation and the hematologist ran a bunch of tests who then diagnosed me with the GPA. I'm frustrated that more diagnosis keep getting added, but none of the biologicals used to treat them help. I was referred to Mayo last year, but "they don't think anything more can be done for me than is already being done locally." I'm hoping with this new diagnosis that more meds will now be available for the docs to try for treatment.

[mishb]

Hi Pandas mom x 2 and welcome to the best forum around.

Wow your symptoms and conditions are crazy. I'm glad someone had the sense to run a few more tests.
But hey, what's one more disease to add to the others - cheaper by the dozen :razz:

I hope a new treatment will see some improvement for you

I'm so sorry that you are going through all of this, and I hope

[drz]

Yeah. My Rheumatologist claims to treat GPA but he didn't run the antibody tests for it at all, which is why I'm so frustrated. He's been treating me for the CREST and other autoimmune diseases for the past 10 years. I've had elevated WBC and deminished lung capacity of 60% for almost 7 years now. It wasn't until this "flare" and my sinus CT came back with extreme inflammation and the hematologist ran a bunch of tests who then diagnosed me with the GPA. I'm frustrated that more diagnosis keep getting added, but none of the biologicals used to treat them help. I was referred to Mayo last year, but "they don't think anything more can be done for me than is already being done locally." I'm hoping with this new diagnosis that more meds will now be available for the docs to try for treatment.

Did you go to Mayo and get a diagnosis and /or treatment plan?

[PANDASmomx2]

Mayo wouldn't see me even as recent as last month, but I'm hoping the doc will go at them AGAIN now that I have this diagnosis added. All my other docs were surprised that Mayo wouldn't see me with the previous diagnosis'. I was taken back by the mayo response that "they don't think there is anything more they can do for me that isn't already been done locally". Do they not have confidence that I'll get better? Are they really no better than the doctors here anyway? Have all the necessary tests already been run? Is it really a matter of them not making enough money off my insurance? So many questions and I'm just left wondering.

[drz]

Mayo wouldn't see me even as recent as last month, but I'm hoping the doc will go at them AGAIN now that I have this diagnosis added. All my other docs were surprised that Mayo wouldn't see me with the previous diagnosis'. I was taken back by the mayo response that "they don't think there is anything more they can do for me that isn't already been done locally". Do they not have confidence that I'll get better? Are they really no better than the doctors here anyway? Have all the necessary tests already been run? Is it really a matter of them not making enough money off my insurance? So many questions and I'm just left wondering.

Good questions. Were your doctors supportive of the consult. Maybe they think your treatment has been very good and your evaluation thorough?? I know they wouldn't take me for inpatient initially despite several requests from various doctors and family members when I was first diagnosed because of my just going on Medicare. But they consulted on my treatment and later accepted to see me for consultation and now to participate in their long term GPA study.

[vdub]

My mother-in-law had CREST -- not a good disease. You certainly have quite a line-up of ailments. What's your med list look like?

[drz]

Mayo wouldn't see me even as recent as last month, but I'm hoping the doc will go at them AGAIN now that I have this diagnosis added. All my other docs were surprised that Mayo wouldn't see me with the previous diagnosis'. I was taken back by the mayo response that "they don't think there is anything more they can do for me that isn't already been done locally". Do they not have confidence that I'll get better? Are they really no better than the doctors here anyway? Have all the necessary tests already been run? Is it really a matter of them not making enough money off my insurance? So many questions and I'm just left wondering.

There are several Weg experts listed on the Vasculitis Foundation page to help patients find a doctor. Mayo seems to have the highest number listed for one facility. The page also states these listed doctors can provide consultation. Can you treating doctors try contact some listed expert who might be able to consult in the area of most concern to you and your treating doctors? It need not be an expert at Mayo although I think most doctors at Mayo identify with their philosophy of being experts who can and should consult with other doctors to ensure good state of the art medical care (My Weg expert certainly does and has consulted about several of us) but you might have encountered one that hasn't bought into their philosophy. I have encountered a couple at Mayo which lead me to going elsewhere for one surgery. But most buy into their Presidents viewpoint:

Message from Dr. John Noseworthy - About Us - Mayo Clinic (http://www.mayoclinic.org/about-mayo-clinic/message-from-dr-noseworthy)

Mayo Clinic is a nonprofit organization committed to clinical practice, education and research, providing expert, whole-person care to everyone who needs healing.

[Dirty Don]

Mayo is a bit of a closed system in that they pick & choose among patients & don't relate promptly to 'outside' system docs. But, YOU must make the calls...they tend not to respond to docs outside the system as well. If your doc did the calling & told them what he's up to with you & it was satisfactory protocol with them, then Mayo saw no need to get involved, but they would consult if asked. Now, if one calls every day, doesn't let up, one will get into Mayo...they didn't have time for me either, but wife kept calling them every day until my wait time was reduced from 2 months to 3 weeks. I don't believe they did anything other docs wouldn't/couldn't have done, but Mayo does it with efficiency & promptness & aggressive attitudes towards whatever one has. Once your relationship is established with them, they are the best & 15% more expensive. It's not that they won't do what other docs do, it's that they do it with efficiency & much more personal time spent with the docs than most, and a wealth of back up at their fingertips. I'd go in in the morning for tests, had my reports & dxes by that afternoon in the doc's office. They are good, just need to learn to manipulate them. Best to you.