I see specialists in boston tommow In the past 2 to 5 years I have gotten a...

I have had a positive RF since I had my double mastectomy in 2009 ….with not a very clear answer. I have seen a rheumatologist at local hospital. he has not watch me for HLB27 or the rf. Does not draw blood or x ray on joints or body that is hurting. I have inflamed on my tailbone. That I know from CT scan.

I also have raynaud's phenom.

My iron get low. But it not anemia the iron goes somewhere else.

It always start yellow and green in my nose.

Low vitamin d

I have osteopenia of since had hypostomus at 33

My kids say I am deaf.

I have been during went to train at ymca. I go to 4 small group a week. With trainer and nutristart. I am down 20 pounds. I also do exercise in the water. With classes.

My doctor wants me to have a glucose. Test. I have to bring food every where it I crash.

I have fat deposit in both arms.

When I wake up in the morning I am very stiff. Back and legs hurt. It takes a while. My bed is less than 3 years old.

I have had troupe with my arms and hand since double mastectomy- i was diagnosed also with lymphedema

Chronic yeast infection

Have trouble pushing panic on car.

Dry mouth and dry eye

Chronic yeast infection

Knees swollen.

Feet swollen

No infamy very sore back legs hands

%d comments
  • Please visit www.vasculitisfoundation.org and click on the Find A Doctor link to find a doctor who specializes in vasculitis who is close to you and takes your insurance. If the specialist tomorrow does not know what's wrong, please find a vasculitis specialist close to you and go there.

  • I am going to Dr. Niles practice tommow

  • Xxxxxxx Yzzzzzz, my father sees Dr. Niles and we have nothing but great things to say about him and the entire staff in the office. I hope you have a similar experience and get some answers!

  • I hope so

  • Hope you find help. I had a great Rhemy at lahey. Diagnosed me in the ER right away after two months of wrong diagnosis. I have a rare condition, had a rotten specialist at mass general. He told me I was fat and there was nothing wrong but to loss weight. I have Cogans syndrome. It's made me deaf, I now have PAN , and 11 other rare conditions. But the dr at lahey was the best and knew just what to do. Hope you have a great dr too. Good luck

  • You are happy with the practice. They have help your dad.

  • Dr. Niles Is on the vasculitis Foundation list. You should be in good hands tomorrow.

  • Xxxxxxx Yzzzzzz I sent you a message

  • Dr Niles is great!! Very knowledgeable and helpful. Ask him about his fruit/seed analogy for how to explain Vasculitis and the treatments. I also went to see Dr Miloslavsky at MGH for rheumatology when I lived in Boston. Both very good experiences!

  • That who I have a appt on the first. I hope to get to the bottom of it

  • I am in Boston. Who are you seeing? What hospital? Looks like there is a lot to sort out. Good luck.

  • I go to Lahey. What doctor/specialty?

  • Mgh

  • Oops. Just saw that.

  • I was seeing MATTHEW Alexrod in Burlington, but I moved to Arizona in 2013. Saw him from 2008 til then. Wonderful guy, can't say enough about him. He saved my life. He told my husband and mother in the er I was dying and had one foot in the grave. I wanted to leave, not a hospital fan. My white blood cells were too low and the red ones over a billion, c-reactive proteins all over the place. He told me right then this is what you have and now this is what we do. I was in remission from 2010 til this year. Like I said wonderful dr also a great guy.

  • I see Dr. Niles also. Very happy with him and his staff. Definitely ask about the fruit/seed. Best explanation I've ever had. If you need a pulmonologist Dr. Colleen Channick at MGH is the best.

  • Xxxxxxx Yzzzzzz I haven't heard about his fruit/see explaination.. lol Will have to ask him..

  • Best of luck & save up your strength for the appt. Folks like us only have so much!

  • Wow.......I've not run into him there. All my docs and specialists are there except for rheumatology. I see Dr. Paul Monach at Boston Medical Center. We are blessed to have wonderful medical care here in the Boston area!

  • Dr Alexrod sent me to see Dr. Monach to confirm my diagnosis. He's was great, sat with me, explained everything I was going to go through and said if I needed to talk just call him. Then the Drs gave me a number, because I'm rare. I've been trying to get into the Mayo Clinic here in Arizona, but they refuse to take my insurance. Nothing like the doctors in Massachusetts.

  • What is MGH??

  • You poor dear, you have really been through a long trial with all of this stuff. Sounds like your in good hands now. I hope they sort this all out for you soon. I will pray for you Kelly.

  • Kelly, how are you doing today?