Can an Immunologist treat and oversee Wegs?

[Col 23]

Hi. Just wondering can an Immunologist treat and oversee Wed?
Col 23

[elephant]

I would say no, because they really don't know much about Wegeners disease. I know one personally and he was not comfortable at all and sent me to a Rheumatologist who knew Wegeners disease.

[Col 23]

Hi Elephant
thanks for getting back to me so quickly. Having a few problems with getting sorted out. I know Im having a flare as my eye has pressure and the eye doc advised me he can do no more and I must continue to be treated systemicly for the eye. I continue with steriod drops each day. Going to the docs tomorrow. Some pain in chest and feet are begining to hurt again. I feel so frustrated with all doctors at the moment. Had a lot of nausea and some vomiting this week, felt really low at times and just kept distracting myself that why I havent posted for a few days.
Co23

[JanW]

In the U.S., immunologists mainly treat allergies and asthma. Rheumotologists treat autoimmune diseases like WG. Most rheumys can't treat it well though as it's so unusual, and most have never seen any of us!

[DEE]

hi col23
my consult is an immunoligists but has research and treated wg for over ten yrs
i have confidence in the way he treats me because i dont make life easy for him we often think i moving forward and them wham i do something to prove him wrong just like having these blood clots in my lungs and its usually when hes on holiday has happened the last three times he say he will have to start taking me with him !!
i dont have a rheumotologist which i actually see but wg consult ,consults one about my case
i can understand what you mean about so many docs
when i was in hospital last week it became so confusing who needed to be notified about what ENT KIDNEY IMMINOLOGY GP an so it goes on
even to whos ward i should be on i ended up in a room on would you believe infectious dieases mainly because they knew me from when i had cellultus in leg but because it was the best place to be as immuine compromised and the where able to barrier nurse on the ward felt isolate because the room was down a corridor on its own but as they said better safe than sorry
its a bit of a joke with my admin supervisor about how many (OLIGIST) i see she things im just working through the alphabet . she said she would be worried if i get to z zooliigst
but joking a part it was my immunologist who dxt wg and has given me support and made me believe that it was not just in my head which other dr had made me feel that way
hope that make sense better stop now i think DEEx
ps this weeks new oligist is heamotologist because of me starting warfarin

[elephant]

Col, I am so sorry you are feeling so bad. If your having chest pain, you really need to get it checked out. Col you know your body, need to tell the doctors "Loud and Clear" how you are feeling. I hope you get some relief fast!

[Sangye]

Col, my alarms are going off with your symptoms. I know you're feeling overwhelmed and sick of all these doctors and the whole mess. But you've got to get yourself to a doc asap to be thoroughly checked out. I agree with the others that you need a rheumy (and one who really knows Wegs).

If you can't get in to a proper doc immediately, I suggest you go to the ER and get a chest CT. Your lungs may be bleeding or you may have a clot. Let them know that Weggies are prone to blood clots-- they won't know that, and they have to do a special type of CT to look for clots.

[Lightwarrior]

Col, I agree with Sangye.

[DEE]

i agree with them both espeicallly in the blood clot department get it checked to scary but a great releif when given the right treatment for DEEx

[sharon]

Good evening Col23,
You really are not having a good run at the moment, hang in there, I hope you get on well at the DRs tomorrow and things will start to improve soon.