Discussions By Condition: I cannot get a diagnosis.

Wegener's granulomatosis?

Posted In: I cannot get a diagnosis. 13 Replies
  • Posted By: Doug97
  • May 18, 2007
  • 00:28 AM

I am (or was) a healthy 28-year-old non-smoking male who walked 7 miles per day. 2 months ago I started having chest pains unconnected with exercise. I went to my GP, who sent me for a chest X-ray, which was clear, so he diagnosed costochondritis.

2 weeks later I started to feel ill, like I had the flu. I started coughing and wheezing. My GP gave me a 10-day course of Cipro XL, but I was worse by the end, with intermittent fevers, joint and muscle pain, and night sweats. He sent me for another chest X-ray, which was still clear, so he referred me to a lung specialist.

I saw the lung specialist after getting another completely normal chest X-ray, the wheeze and the dry cough getting worse. He sent me for a pulmonary function test, which showed some small airway obstruction, but very little methylcholine response.

By this time I was also getting nose and sinus pain (my sinuses hurt when I press on them), along with nosebleeds. The lung specialist then sent me for a chest CT and blood tests, which included ANCA, ESR, creatinine, ANA, liver function, HepA+B, calcium, potassium and sodium tests. All came back normal (except the CT showed a nodule on my thyroid).

Then the pain in my scrotum started getting worse. It initially started 2 years ago, and I thought it was a varicocele (I still do). But now it is much more painful, and there is another pain where my prostate is. I am also now having trouble urinating.

Other symptoms include tinnitus and dizziness when the ear pain is at its worst, clear fluid leaking from my ear, extremely cold toes, tiny white bumps all over the back of my mouth and throat, pain and tenderness around my nipples, no appetite and dry eyes and mouth.

I have been off work for 3 weeks now, and am extremely worried. I have been researching my symptoms, and the only things I can find that fit all the symptoms are various types of vasculitis, especially Wegener's. However, the ANCA test and even the ESR test have come back normal.

I feel absolutely awful right now, and am in considerable pain. I am terrified that my kidneys will become involved before the doctors decide to believe me. The lung specialist has referred me to a ENT specialist, a urologist and an immunologist, but I am afraid that going to so many different people will only delay a diagnosis.

Please someone tell me what I should do next.

Reply Flag this Discussion

13 Replies:

  • What you should do next is this: google symptoms of chronic fatigue syndrome google symptoms of Myalgic Encephalomyelitis If that is not enough to convince you...read last 5 pages of thread titled "It's a mystery until we solve it" It will all begin to get crystal clear... I am a 38 year old nuse who has been ill for years...like many in this forum I have been unable to get a correct diagnosis........like many in this forum I have been to countless docs, specialists, had several tests and have been "tried" on many meds.................................like many in this forum I could go on and on...look at info I have provided...you will save yourself a lot of time and a lot of heartache...mommy cat:)
    mommy cat 1654 Replies Flag this Response
  • Wegener's certainly fits your description. You could also check out Good Pasture's syndrome which overlaps with Wegeners, espcially if you feel your kindeys aren't well.. Sarcoidosis can also cause these symptoms, especially if you're african american you should be tested for it. It occurs in all races, but african americans have a higher rate.Your problem could also be from an infection: pseudonomas aur. likes ears and lungs, or another bug. Good luck
    Anonymous 42789 Replies Flag this Response
  • Can either of those conditions cause ear and sinus pain/swelling?
    Doug97 2 Replies Flag this Response
  • several people complain of ear problems I myself, get sharp transient ear pain...mostly L side unable, until know to know why please google symptoms of Myalgic Encephalomyelitis I have had several complaints for a long time no rhyme or reason...now it all makes sense and my doc is currently testing me Good Luck...mommy cat
    mommy cat 1654 Replies Flag this Response
  • It could be an allergy (also an 'energetic' allergy), a deficiency, a parasite, a toxin, or a parathyroid malfunction .. Read www.parathyroid.com - you'd be lucky if it is this and not something else.To act immediately, find colloidal silver (silver ions suspended in water). See www.nutrasilver.com for a type you can take internally. One can drink the ordinary type as well, but rather just keep a tot in the mouth for 10 minutes and spit it out. Also great for external application, dab it on. Here in ZA we brew it at home. It has proven consistently better than any med or antibiotic, for almost any problem. If it is correctly made there are no side effects. Please see www.tetrahedron.org/articles/colloidal_silver.html for info. Boost your immune system all you can, perhaps you already do. Get homeopathic Resque Remedy. Add Vitamin-B12 (complex), Omega-3 (salmon oil / flax seed oil) and of Vitamin-C 1000 mg (slow release) per day. If you use supplements already, be sure not to overdo it. Too much of certain vitamins may have the results you describe. But you can take quite a lot of Vitamin-C and even tablespoons full of Omega-3. The best Omega-3 is kept in a freezer in the health shop, not in caps. To help the kidneys, also take cod liver oil. Avoid heated cooking oil (cook veggies in water and flavour with unheated extra virgin olive oil) and avoid processed foods (containing hydrogenated vegetable fat, additives etc). No margarine please, use real butter. Look for Trocomare salt (by Dr A. Vogel of Switzerland) in the place of "smooth flowing" salt. Be sure to include cabbage (lots) and garlic.There may be allergies underlying your condition. Try NAET treatments, they know of more allergies than the doctors. Visit www.naet.com to locate a therapist in your area. A traditional Chinese doctor is another great idea, see www.acufinder.com to locate one. I'm impressed with a site I found, http://www.westonaprice.org/sitemap.html - be sure to read this one: www.westonaprice.org/soy/complaints.html whole page (!) and elsewhere http://thyroid.about.com/cs/soyinfo/a/soy.htm .. There is a lot of soy in commercial bread, and in almost everything. Many other ingredients may cause problems, a NAET therapist will identify them.See http://forums.wrongdiagnosis.com/showthread.php?t=15263 about Lymes - tests easily fail to detect it. Here is a good M.E. site, http://www.ncf-net.org/NCFresearch.htm - they say testicular infection is one sign of Cryptovirus, identified in patients with Chronic Fatigue Syndrome: http://www.ncf-net.org/library/PressRelease0606.htm .. Ciguatera poisoning is often found in M.E. cases, general info at http://en.wikipedia.org/wiki/Ciguatera - even from Salmon, be tested if possible. Another good M.E. site is http://knoxintegrativemed.com/chronic%20fatigue.htm - and DON'T believe the abject morons at http://www.cdc.gov/ncidod/diseases/cfs/treat.htmHighly upsetting stuff at http://www.dldewey.com/morgel.htm .. Please read Dr Staninger's full paper: http://www.dldewey.com/misc/stan.htm - "63 % of the patients diagnosed with Chronic Fatigue Syndrome (CFS) had a hidden lung worm, Cryptostronylus pulmoni cultured from their sputum. This species of worm is a nematode. Its male measures 250 nanometers, while the female measures between 750-100 namometers in length. (26) Currently, biological pesticide manufacturers are using nematode eggs as delivery systems of viral protein envelopes to corn, potatoes, and other agricultural feed materials that are used as feed for poultry, beef and domestic animals (cats and dogs)." .. I hope colloidal silver can fix this too. Note that colloidal silver will not work while taking steroids.Try an electronic zapper, it works. See my post at http://forums.wrongdiagnosis.com/showpost.php?p=41730&postcount=6 - there are serious forums for this at http://curezone.com (2 for Dr Clark) as well as for colloidal silver, and for very many diseases etc.
    Curly Stooge 319 Replies Flag this Response
  • Curly...there you go again many need this info...please share what you know...so we may all begin to heal ourselves from the inside out May you be blessed always...mommy cat
    mommy cat 1654 Replies Flag this Response
  • run to a rhumatoid doctor
    Anonymous 42789 Replies
    • September 17, 2007
    • 01:16 AM
    • 0
    Flag this Response
  • Curly Stooge wrote "Boost your immune system all you can..."Only an idiot would deliberately boost his immune system, knowing (or even suspecting) his disorder to be Wegener's Granulomatosis. ...His immune system (in WG) being that entity which is going haywire and doing its best destroy him, and his own tissues, in a life -threatening cascade that includes a loss of self-tolerance, confused signalling and circulating ANCA (antineutrofilic cytoplasmic autoantibodies), phagocytosis, destructive macrophages and an emergent need for extremely potent chemotherapeutic treatment (that is, itself, toxic).
    Anonymous 42789 Replies
    • November 10, 2008
    • 07:37 PM
    • 0
    Flag this Response
  • Your symptoms do sounds like wegenersi actually have the disease myself being 16 its kinda rarei can understand why the doctors would be unwilling to treat you for wegeners if the ANCA test is normalthe treatment is steroids (a g for every kg you weigh to begin with) and cyclophosphamide, neither of which i can assure you are nice.do you have the lesions that most wegeners patients have?their a bit like blisters?usuallys doctors will biopsy one when testing for wegeners, they also could biopsy the sinus.these are all options for a diagnosis, as not all wegeners patients have weird ANCA test resultsbecause its rare a doctor may take a long time to figure out whether or not you have it, i nearly died before they started treatment because they just werent 100% sure until then.
    Anonymous 42789 Replies Flag this Response
  • I am a Weggie and only can a biospy determine if you have WG or not. My recommendation is to go see a Rheumatologist who specialize in WG. Visit the Vasculitis Foundation website for a list of specialist based on your hometown. This is the only way to know for sure...and don't delay...WG is like wildfire once it hits your kidneys and if not treated quickly becomes an uncontrollable forest fire.
    Anonymous 42789 Replies Flag this Response
  • My son has been diagnosed and is being treated for Wegener's. He is not ANCA positive but has all the sinus, lung and (initially ) kidney issues. His kidneys have improved with plasmapherisis. His lungs, well ... not so good. He is only 23. He's been on cytoxan and steroids for about a year and a half now. Not yet into any sort of remission, but finally leveling off in the destructive part. If it is WG you do not have alot of time to wait on diagnosis. They diagnosis came form a kidney biopsy and a PCR-3 indicator. Go to a RA doctor.Your symptoms do sounds like wegenersi actually have the disease myself being 16 its kinda rarei can understand why the doctors would be unwilling to treat you for wegeners if the ANCA test is normalthe treatment is steroids (a g for every kg you weigh to begin with) and cyclophosphamide, neither of which i can assure you are nice.do you have the lesions that most wegeners patients have?their a bit like blisters?usuallys doctors will biopsy one when testing for wegeners, they also could biopsy the sinus.these are all options for a diagnosis, as not all wegeners patients have weird ANCA test resultsbecause its rare a doctor may take a long time to figure out whether or not you have it, i nearly died before they started treatment because they just werent 100% sure until then.
    Anonymous 42789 Replies
    • February 27, 2010
    • 10:46 PM
    • 0
    Flag this Response
  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • More information about Wegener's Granulomatosis can be found at WegenersDisease.orgwww.WegenersDisease.org
    ranpar01 1 Replies Flag this Response
  • Doug,I've had Myalgic Encephalomyalitis (ME) for a number of years and I'm not convinced that this is what you have. Some of the symptoms are spot on, but not all. We do vary a whole heap though, so someone may contradict that view.As there is no really effective treatment for ME and, at least in the short term, it is not life threatening, do keep looking for a diagnosis elsewhere as other conditions might call for prompt intervention.I suggest that you also look at Dr Sarah Myhill's websitewww.drmyhill.co.ukas she gives advice on many conditions, not just CFS and ME which is her specialism, and some of her lifestyle changes and recommendations are the same for all of us, whatever our condition. She's keen on getting regular sleep pattern, a stone age diet and pacing activity rather than the madness of the NHS graded exercise treatments. Let me assure you that she is no quack, despite the fact she bangs on about these things. If you are lucky enough to get treatment from her - she does charge for testing and consultation however - then she orders tests that GPs seem not to have heard of and gives the best advice and treatment of anyone I've come across.I've gone from sleeping 18 hrs out of 24 and being unable to lift my head on occasions to doing voluntary work and caring for my family going in more recent years. Not all was down to Sarah, but a good deal.She might be able to advise you on what other, more sensitive, tests might be available if nothing else.Do let us know how you're doing, I'm new here, but will try to remember to check back.Warmest wishes for a clear diagnosis, effective treatment and a quick recovery.For anyone with any kind of Chronic Fatigue or ME like condition I can recommend Sarah Myhill who calls us her delicate flowers and really 'gets' us. She is also well qualified and looks into any new treatments and tests for a variety of conditions.
    Anonymous 42789 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.