New to the forum

[Lady Bug]

Hi, my name is Brande and I am 28 years old. I guess my journey began when I was about 12. I lived with my Greatgrandmother most of my life. I was severely anemic and at 13 and I was diagnosed as being neutropenic. I began experiencing chronic pain....almost everywhere. I remember that the only way I could describe it was as a "sharp pain not in my skin, but deeper". It seemed like non of the docotors could understand. I was getting my blood checked twice a month until I moved in with my oldest sister becuase my Greatgrandmother couldn't take care of me any more.

I had a bone marrow biopsy at 16, but they found nothing. A few years went by and the pains came back, but even stronger....I could barley move. I started going to a doctor that did a series of blood tests. They MAILED the results to me and Wegeners was on it. I had no idea what it was so I scheduled an appointment and my doctor told me not to be alarmed because I am African American and that it couldn't be that. I didn't think anything of it, but shortly after I lost some of my hearing.....that scared me. I had a hearing test and it confirmed that there was a loss. I moved home and returned to the doctor my Greatgranmother took me to.

I had every blood test imaginable and he told me that the only other explanation would be Wegeners. He also told me that I would need a biopsy to confirm that. My mom told me not too, so i didn't. Soon after I had a hard time "catching my breath". I took a test and they told me that my lungs weren't diffusing oxygen they way they should. After that, I stopped going to the doctor. I continued having the pains, but I don't discuss it with family or my husband (I've had 3 breast tumors removed in the past year and a half) I still have problems with my hearing, It's hard to breathe again, and these pains hurt. They're so hard to describe other than sharp...like some one is pinching me from the inside out. I thought I have allergies, but my nose runs so uncontrollably. Am I over reacting? Please give me your advice. I dont want go back to the doctor unless it's really necessary.....thank you

[andrew]

It's necessary!!!! See a doctor. Yes, it can be daunting but it's far less daunting that not being able to breathe. Please, please go see a doc. It's important that you don't put up with symptoms. You're certainly a rare case being African American and having WG but that doesn't make it impossible. Take all the blood tests you have ever had, especially the one that says Wegeners and get to a doc....now.vIf that doc dismisses, you, see another one. Where are you located? Someone here might be able to recommend a doc in your area.

Edit: I see you're in Phoenix. Not sure if anyone here has a recommendation but hopefully they do.

By the way, welcome to the forum!

[Lady Bug]

Throughout the the years I've been reading post on forums from people that has had such bad experiences. I kept telling my self that my "symptoms" are separate incidents and that I have no right to say that WG is what I'm experiencing. Sometimes it feels like something is always wrong with me. I've always had "allergies", but allergy medication does not work. I have a sore in my nose that stings. I started having nose bleeds when I was pregnant 5 years ago.

I had the 3rd breast tumor removed right before my husband and I moved to phoenix so that he could go to an audio engineering school. After ariving, I got a bad urinary/bladder infection and they found blood in my urine. Then they found a 4th tumor, but the others were begnign, so I'm not having surgery. My husband is my middle school sweetheart and he remembers me being hospitalized for neutropenia. He's been so wonderful through my surgies as an adult. He just graduated, he enjoys the company he's with, and....he's happy.

I came to this site for advice, understanding and, friendship....Andrew, I will return to the doctor. Which type should I start with? I'm going to see how far I can get before i say anything to my husband, but I will definitely keep posting. I really appreciate your response and and those that may come in the future. Thanks a bunch !

[andrew]

Yes, the Internet can be a wonderful mine of information. It can also scare the crap outta you!

Your husband certainly sounds like a great guy. Far be it for me to give you relationship advice but in my experience, the sooner you tell your loved one the better. They are there to support you. You've obviously had other health issues and he's been there for you. I understand that you don't want to burden him with 'yet another illness' but this guy has a good track record! My advice would be to tell him as soon as you can but it's entirely up to you of course

As far as what kind of doctor to start with, I think a good GP would be the first step. He/she can then refer you to a specialist. Also, this page of the Vasculitis Foundation's website will give you contact details of WG docs that your GP can contact: Medical Consultants | Vasculitis Foundation

You might need to ask around to get a good GP but they're out there! The earlier someone takes a look at your symptoms, the quicker you get treatment. The quicker you get treatment, the less you'll be 'down' before you can get up again.

I've also asked about a GP in another forum I'm in so between who we have on here and who's on there we'll hopefully have someone for you.

When you go, don't forget to take all your test results. Don't be surprised if the doc orders another lot of tests (they do that a lot) but at least what you have will give a history.

[crackers]

hi brande i'm john.welcome,if that's the right word,to the forum.my consultant told me the set of symptoms i was presenting were rare but i still had them,so rare doesn't mean impossible.please get back to your gp i ignored my symptoms for three months thinking they would just go away and ended up seriously ill in hospital.good luck and stay healthy.
john.

[Sangye]

Hi Brande,
I just moved to Maryland from Arizona (Sedona and Flagstaff) a few months ago. Hello to my favorite state!

Please call the Mayo Clinic in Scottsdale to be assessed. Like Andrew said, it is extremely important that you go now and don't put this off. Many of us almost died because no one would take us seriously, or we didn't pursue getting care ourselves.

My rheumatologist at Mayo was Dr Mehrdad Mazlumzadeh (Dr Maz). Mayo will do a very complete workup and figure it out. They will not ignore you. When you schedule an appointment, tell them it's urgent that you see a rheumatologist who knows about Wegs (that's Dr Maz), because you've tested positive for it and have not received treatment. They'll get you in fast.

In case the main scheduling dept doesn't understand, call Dr Maz's office and ask for their help.

Please, just call now.
Main Scheduling 480-301-8000
Rheumatology- Dr Maz' office 480-301-4342

(It's funny, I still have Mayo and Dr Maz's phone numbers on my cell phones as I transition to new docs. Just yesterday I thought "I should delete them." I couldn't make myself do it.)

[andrew]

Nice one, Sangye. Thanks for the info. You rock, as usual

[Lady Bug]

Thank you, John and Sangye. I'm lovin Arizona!!! It's so beautiful here. I will call to make an appointment. Meanwhile, I'll try to get my hearing, lung, and blood tests. We have health insurance...I'll call to make sure they accept it. It's a start! I apprecitate your guidance so much. I'll let you guys know what happens. Peace and Blessings

[crackers]

good to know your doing something positive.please keep your husband up to date with what's going on.i don't think i would have made it without my wifes support she has been amazing.he loves you and will be there for you no matter what.

[Lady Bug]

I called the clinic and made an appointment. I go Monday at 8!!!! I asked for Dr. Maz, but he wasn't available, so I'll be seeing another doctor. I discussed it with my husband and he's been working on our insurance numbers....we're enrolled through his employer, but we haven't received the cards yet. I am so glad you didn't delete those numbers, Sangye......

Andrew, thank you for encouraging me to go! Sangye, i wouldn't have known where to have gone without you. Crackers, I did talk to my husband. He's been reading more about WG. We're working on our communication....he feels helpless and doesn't know how to react. I told him that love and support is enough.

The lady was so nice when I made my appointment. She told me about fasting and everything, but could any of you tell me more of what I should expect if they're starting from the beginning? Should I write down what I remember from my history? I didn't think I would be able to go so soon, so I have no medical records.

All of you are my Angels and each of you and your families are in my prayers. Peace and Blessings