Asked Rheumatologist for Referral to John Hopkins bc she won't give me meds without a

[Juliesjewels]

Enough is enough...

I've had two episodes of a necrotic nasal septum (because ENT surgeon actually repaired & closed the first hole but it came back), vision problems, terrible joint & muscle pain, stiffness upon getting up from a seated position, mouth & tongue ulcers which come & go periodically, profuse sweating (both night sweating & sweating along with exertion), various elevated inflammatory blood markers, extreme fatigue, shortness of breath with basic movements, and most importantly a poor quality of life because I'm not able to actively participate with my family.

I've been on 10-40 mg prednisone for 6 months & latest labs C-reactive protein 2.3, complement component c3 is 209, sed rate 28.

But I've got two neg ANCA tests and two neg nasal tissue biopsies. I've also just had a CT scan of lungs, abdomen & pelvis & nothing was seen on lungs or kidneys. So my rheumy says I'm not in an advanced enough disease stage for Wegeners to be definitively diagnosed & waiting won't hurt bc my scans are good right now. She says right now I'm healthy. :(

In your opinion, do I have Wegeners? Your thoughts, please.

Julie


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[me2]

I don't know if you have Wegener's - although the symptoms sound like it. I do know that you are not 'healthy' if you are having these symptoms. If it is Wegener's then your treatment is currently inadequate.
You can have all of those lab reports and still have active Wegener's . I think it is great that you have a referral to Johns Hopkins where they might more accurately determine what is going on with you and come up with a treatment plan that gets you feeling better again. You are sick, you are not healthy and someone treating you is not going to be able to help you by thinking you are are healthy with all of these symptoms. Keep advocating for yourself until you are healthy again.

[LisaT]

It makes no sense that a doctor would refuse to treat symptoms that are ruining your quality of life, just because of a number on a lab result... Unless he or she can't justify the expense until the lab results reach the numbers to 'qualify' you for the meds. The more I hear these stories the more I think that in some ways we are only a number to the medical establishment. I know for sure we're only a number to the insurers. They hope to keep us very small, very quiet numbers. Apparently you will need to jump up and down and make some noise? It shouldn't matter whether they have officially labelled you with the disease or not. You need treatment and need to feel better and prevent future damage to your body. I'm glad you're going to see the experts. Keep us posted and best of luck. It seems that the docs who really know this disease are well aware that it can be active and require treatment without the 'typical' blood markers, if there is even such a thing as typical with this ever-morphing monster that seems to present differently in every patient.

[windchime]

Does your insurance allow you to self refer? If so call and make an appointment without the referral from your rheumy. I would suggest getting copies of records, labs, scans, etc to take with you. Also Cleveland Clinic may be closer for you unless you prefer JH.

[pberggren1]

Sounds like Wegs to me. You need a Wegs expert.

[Lilly]

Enough is enough...

I've had two episodes of a necrotic nasal septum (because ENT surgeon actually repaired & closed the first hole but it came back), vision problems, terrible joint & muscle pain, stiffness upon getting up from a seated position, mouth & tongue ulcers which come & go periodically, profuse sweating (both night sweating & sweating along with exertion), various elevated inflammatory blood markers, extreme fatigue, shortness of breath with basic movements, and most importantly a poor quality of life because I'm not able to actively participate with my family.

I've been on 10-40 mg prednisone for 6 months & latest labs C-reactive protein 2.3, complement component c3 is 209, sed rate 28.

But I've got two neg ANCA tests and two neg nasal tissue biopsies. I've also just had a CT scan of lungs, abdomen & pelvis & nothing was seen on lungs or kidneys. So my rheumy says I'm not in an advanced enough disease stage for Wegeners to be definitively diagnosed & waiting won't hurt bc my scans are good right now. She says right now I'm healthy. :(

In your opinion, do I have Wegeners? Your thoughts, please.

Julie


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Hi Juliesjewels, I have not been on the site for awhile, about a month. But I get updates on my phone, and when I saw yours, I have tried to find the post where I finally told my whole story. Its very long, as I have had it for 24 years, but was pretty close to the end by the time I went to the hosp. And then, I went through what you went through, they did nose bx. It came back positive (I know yours did not) I had a Chest x-ray (have they done that to you yet?) And my CXR showed many tumors. They picked one and did bx on that. And it was positive. But the ANKA was too new to use, and anyway, Ive been told, it is not accurate until you have had enough of them, for them to know what is normal, and what is flaring. Like we each have our own "normal". But the doctors did not want to do a bx on my kidneys because they did not seem to be involved at all. But with 3 different doctors, the ENT who had been treating me for over a year, and was stumped by not being able to get rid of my ear infection and my tear ducts getting clogged, and my nose was a MESS! Another Dr. Who was my Rhemuatologist, I had ALL the symptom you had of muscle pain, joint pain, I could not walk. I was crawling on the floor of my parents just to go to the bathroom. I was sweating through a blanked a day on their couch. (All before the hospital, sorry, I got off the Drs. diagnosing me) So my EENT, My Rheumatologist, I had just started going to before the hosp. and an Internest, whos friend in Birmingham who's wife was just diagnosed with the dz. and it was starting to be studied more seriously at UAB. With only 2 positive dz. and their professional opinions, I was diagnosed. 2 weeks later I was out of the hosp. on 80mg of pred. and feeling like I could fly! LOL. But your nose and my nose have a lot in common. Although mine happened 10 years into my life with wegeners. I had always irrigated to get the crusties under control, and I lost my septum very early on, but eventually I got saddle nose. It just went flat! Sooo Ugly! So a plastic surgeon put someone elses cartlidge in it, and it looked awesome! A lot smaller, but beautiful.......for about 6 months, then all the cartlidge was gone. So 6 months or so later, he did another surg. using my ear cartlidge (like you) and just in case, put a piece of plastic inbetween the cartlidge. You can only have about 3 nose surgeries, without it looking like Michael Jackson. Well 6 months later all the cartlidge was gone, but the plastic held it up. Its still in there! LOL, Although it only holds up the bridge of my nose, and I have no septum whatsoever. My nose is not perfect, but its not flat! ........Julie, I feel you have Wegeners. I have not yet ever had kidney involvement, and hope I never do. So I pray you get into JohnsHopkins. A good hosp. is so important. UAB at Birmingham is where I found the Dr. to do my Total knee replacement. Its been good ever since (2010) So I hope you keep up posted and get diagnosed soon, so you can get your life rolling again! Take Care~

[Juliesjewels]

Thank you to all who's replied so far. I realize I'm not healthy but it seems I'm the only one who thinks that. ugh! I will keep everyone posted. Thank you for listening to my frustration. I appreciate it and this forum has provided so much valuable information for me.

[Beverly]

Hi Juliesjewels
There is the greatest possibility that you have wgs, but I can mostly speak from my own experience and the comparison with others. The reason for my response is that I do not want you to have get to an "advanced" stage before you are treated correctly!! As I'm sure you well know, the pred is only going to help with inflammation and pain, which is great, but will not slow down the disease.
We all want to see you get the best possible care and ASAP. You may have a good rheumy, but one that is not knowledgeable enough about wg.
Thank you for sharing with us. I pray that you will find someone soon.

[Miranda]

WG can be hard to diagnose. I know when they got the biopsy from my nose it came back positive and my doctor(which I just switched) told me that the anca is not a def. you have WG or not. The symptoms sounds like WG but there are also other things that have the same symptoms that's why its hard to diagnose. It can be many of things and Something very similar to WG. It would not hurt to get a second opinion that's for sure. It sounds like the Doc is wanting to help but at the same time she is probably tied right now because she cant find a diagnoses and doesn't want to treat you with wrong medications. Best of luck to ya and please keep us posted!!

[annekat]

Off the top of my head, I can think of someone on here who was recently having trouble getting diagnosed, probably for similar reasons, and went to Johns Hopkins and was easily diagnosed and treated by Dr. Seo. His pic will come up if you visit the page for their vasculitis clinic. I'm sure that there are other good docs there, too. I seem to remember it didn't take her long to get an appointment. The CC would also be good. However, it would also be nice if you could get someone local to start you on some meds ASAP. I know this might not be easy without a dx, but maybe they could consult with one of the docs at the major centers, see this page: VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/). And if your rheumy will not give you a referral to JH, and you can't self refer, then maybe you can get someone else local to do it. I've seen a bunch of new people from Texas on here lately, and I know it's a big state, but maybe one of them can give you some ideas of other docs that might be more open to dx'ing you without a biopsy or referring you to a specialist. You might look on the Weggie Map, accessible at top of page, and see where the fellow Texans are, if they have added their name, and add yours while you are there.

[Lilly]

Hi Juliesjewels
There is the greatest possibility that you have wgs, but I can mostly speak from my own experience and the comparison with others. The reason for my response is that I do not want you to have get to an "advanced" stage before you are treated correctly!! As I'm sure you well know, the pred is only going to help with inflammation and pain, which is great, but will not slow down the disease.
We all want to see you get the best possible care and ASAP. You may have a good rheumy, but one that is not knowledgeable enough about wg.
Thank you for sharing with us. I pray that you will find someone soon.



Beverly, that is my concern. Wegeners is so different is all of us. She does need to have a Dr. stop the advancement of whatever is going on, and not just treat it, at least not at first. Its like wegeners needs a kick in the butt, then the treatment goes on from there. I think she is doing the right thing by trying to get into Johns Hopkins. Its frustruating....I know the doctors are very well schooled, but when I see Julie trying so hard to get help, and everyone is mulling around "not sure" if its wegeners, it makes me irritated. I remember that my doctors were frusturated that they could not get that "third" positive, to be sure it was Wegeners, but they went ahead and considered their combined feelings and my past year of kidney infections,(the only infection that would get better with antibiotics) sinus infections, ear infections, eye problems, arthritis, muscle pain and big circles of blood filled vasculitis all over my legs and hands......They did not need that 3rd positive. They went for it and started treatment. I want that for Juliesjewels. I don't want her to get advanced either. But she is doing all the right things......Keep going Juliesjewels!!!!! Don't give up!!!! And vent as much as you want. That's what we are here for. :-)

[Alysia]

Off the top of my head, I can think of someone on here who was recently having trouble getting diagnosed, probably for similar reasons, and went to Johns Hopkins and was easily diagnosed and treated by Dr. Seo. .
are you talking about Deb H ?
Jullie, I understand your worries and frustrations. sometimes we have no choice, but to fight untill we get dx and good enough docs and proper treatment. don't give up. we are with you, and you can get some strength from our weggie family :hug1:

[godgirl]

Hey, Julie.

I agree with everyone here. I'm not "officially" diagnosed with WG... However, my rheumy is treating me as if I have it. Because she doesn't want it to get "more advanced!" I read that and scratched my head. Go to some of the places that are recommended. And good luck with everything - I hope you get some answers and treatment.

Jen

[annekat]

are you talking about Deb H ?
Jullie, I understand your worries and frustrations. sometimes we have no choice, but to fight untill we get dx and good enough docs and proper treatment. don't give up. we are with you, and you can get some strength from our weggie family :hug1: Yes, I was talking about Deb H., whom I've seen on Facebook more than on here lately.... maybe she will see this and commet.

[Juliesjewels]

Great news, everyone. My local rheumatologist agreed to refer me to John Hopkins! I'm excited.... It feels awkward to say I'm thrilled to make yet another doctor appointment, but it am! She is writing up the referral & faxing over all of my records. She agreed to do this last Thurs so I'm hoping my mid-week JH will have them & hopefully set an appointment for me. Thank you all for giving me the strength to ask for the referral. I'll keep you posted.


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[annekat]

Awesome news, Julie! Good for your rheumy, realizing you need more expert treatment.

[Juliesjewels]

Great news once again! I've been given an appointment to see dr Mannou @ Johns Hopkins on Aug 19. I'm thrilled because I am sick of being too weak & tired to make a simple trip to the grocery store. And while gathering enough "symptoms" to get a rheumatologist to suspect WG I've taken an average of 25 mg prednisone for about 7 months. I'm miserable because of my weight gain, sweating profusely, limited mobility and I could literally complain forever! But good news is come aug 19 I might actually get some medicines that work because clearly prednisone alone doesn't help. Thank for all who responded to my posts. It's because of you kind people that I took action & got the JH appointment.


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[mishb]

Well all I have to say is - it's about time :thumbsup:

Good on you for being persistent. I'm glad you are going to get some answers

[annekat]

Congrats on getting that appointment! We look forward to hearing how it goes.

[vdub]

and my tear ducts getting clogged
Interesting.... I never made that association with wegs, but, yeap..... Used to get them all the time, but not since treatment...

[me2]

Interesting.... I never made that association with wegs, but, yeap..... Used to get them all the time, but not since treatment...

My ducts got scarred shut by WG about twenty years ago. I had surgery to correct one side and just a few months ago had surgery to fix the other side. Tear duct problems are fairly common with Wg.
The good news is that the surgery to correct scarred ducts is WAY less invasive than it was twenty years ago. They developed a new procedure that is really not a big thing.
The old procedure was to drill a one inch hole through the bone in my face and re-do the plumbing.

That kinda hurt. The new procedure in the words of my doc is about a 3 or 4 on a scale of 1 to 10 ... with ten being the old procedure. He is right, the new fix is not a big deal at all. And it works really good. I had it done about 5 months ago and my eye drainage is still fantastic. So don't put off the fix if a time comes when you think you need it.