Looking for info

[emg]

Hi...
Im writing because im in the process of waiting for a diagnosis....Like many of you started off, I, also have been waiting years..
It started 3-4 years ago wtih my main symptom being extreme fatigue/weakness/exhaustion...To the point of being unable to stand long enough to shower. I was a single mom of 3 working fulltime and with just that symptom my dr ran a basic CBC and since all was well I was told I was likely depressed.Soon after I started with frequent headaches and sinus pain and pressure. I was given many antibiotic but nothing changed. I dont think I ever had an infection....however the so called infections explained why I was worn out all the time. My job lasted 6 months after fatigue started and I had to quit. Around this time i started with major skin sores and rashes. Much was on my face and attributed to some adult acne....I was 28ish. The sores were extremely red and each lasted minimum a month..they always seems to get infected. My body was worn down and I knew it...I got every illness going around and it hit harder and lasted longer than anyone else. I was achey and stiff. (joints in general) and just felt like crap. A doc gave me adderall....makes sense...shes tired and her CBC is fairly normal (WBC always tiny bit elevated....like if normal value was 10 mine were 15)...lets just give her speed....
First week was great but after that it just made me closer to normal. I discovered nasal irrigating and this helped me greatly in the pressure/ crusty nose area. headaches were a little less frequent. Dr also checked my thyroid repeatedly as this seemed logical...numbers were normal. He also did a CT of adrenal glands...normal. Random cortisol (was approx 10 am was "normal" at a level of 10).
Time went on...the "ulcerated kin was an issue...the center of these seemed to be crystalized if that makes sence...once this deep "crystal" type thing came out the skin would heal...I have alot of scaring. I got one of these on the :sill of my nose...I SWORE this was due to snot that was so acidic it was harming my skin...it seemed related. This particular one lasted 9 months. Was given oral antibiotic and topical...nothing. skin was swabbed...culture normal. Finally I had a plastic seorgon remove it and tisse was sent for biopsey. (THru this whole time I still had lots of sinus issues...lots of blowing my nose which irritated this sore half in nostril half out). Biopsey (tissue n small amt cartilage) came back free of malignancy with " eroded epidermis. Underlying granulation tisse with repairitive change (healing skin?) with mixed inflammatory cells. I was told biopsey would recognise bacteria, fungas...whatever the problem was...all I got was no malignancy...
Sinus issues continued and i could tell my septum was affected...seemed to be eroding. Docs loooked and said all was fine. Went to an ENT who BARELY looked inside my nose and told me saline...DAH....Id been dealing with this for almost 4 years, I knew saline humidifyers irrigation...! FRUSTRATION!! I was so ready to give up on drs...at this point id seen 5...I swear my records were marked hypocondriac who needs anti dep meds! 3 days after she told me my nose was dry my septum perforated with a pretty large hole. New ENT...I decided I wasnt gonna give any history...let him figure it all out! HE WAS CONCERNED. NO drug use...no reason for a perforation. He immediatly questions an autoimmune disease and says he wants immediate surgery. At this point I give him my history and he agrees blood work should be evaluted prior to surgery so he orders C reactive protien and sed rate (ESR)...both are in normal range ESR is 14 CRP .7 my ANA was "negitive" i wasnt given any number value as this result was in fri and nurse just said "neg". c anca and p anca are due in early next week....they were sent to Mayo. (im in WI) ENT has stressed exploratory surgery with a biopsey likely needed as I now have a diviated septum...that was not diviated before....My septum moved! Also my perforation causes a wistle and tons of crusting and bleeding. Every time i googled new symptoms i came upon this forum.....Ive been reading it often!! Im hoping for some insite on the kinds of lab results others had. My ANA is neg...
I also have (MUCH worse last 2 months) my feet "fall asleep" often...day and night and are sooo painful when they "wake up" which lasts a long time. Painful joints (left elbow and pointer finger are main ones that cause the most pain) weakness...w elbow hurting...that hand cannot lift anything...strenghth is gone. I get alot of rashes and itching...have had a refillable persc for cortisone creams for many years. (exema guess) but I get a sensation of swollen skin...(rings still fit so Im not that swollen) but I FEEL swollen and this seems to increase the itching. I also get it way more in summer than winter leading me to believe it not dry skin. Im 31 years old and Im falling apart. I hurt, I ache I cant beathe or smell. Im often out of breath but I DO smoke...I KNOW!!! but I swear Im gonna die young ANYWAY so its hard to find the desire to quit for my health.
Can anyone shed light for me....? I will repost my c anca results asap but this is a long weekend! Of course I dont want to have an autoimmune disease but Ive gotten to the point where I question if everything is "in my head" as the docs have....their are many days I say..."THIS IS NOT IN MY HEAD!" I rarely have energy to see my friends, Im dating and I suck as a gf cuz if he wants to take me out I have to be sure to have a low key day or nap....and SOMETIMES i get the strength to go out.

[elephant]

Glad you found us EMG. Don't give up there is alot of support on this forum and we all will help you. First you need to see a WG specialist to make sure it is Wegeners disease or some other autoimmune disease. The symptoms point to WG to me, but I am not a doctor. The one Vasculits Center that is closer to you is Mayo and Mark who is on this forum raves about his treatment there. Are you close to Madison,Wisconsin?

[pberggren1]

Ditto to what elephant says. You need to get to Mayo ASAP and get a complete workup. Your ENT that you see now seems to know a little so try and work with him to get into Mayo fast. I would not let him do the surgery until you see the docs at Mayo. If your bf is good he will understand your situation and just be with you on your down days as well.

[emg]

I am within 2 hours of Madison . I'm in green bay
I think web is a good possibility too but of course..needed a dr willing to look. This ENT was the first dr to LOOK in my nose...his response was "nearlycomplete cartilage destruction, I've never seen anything like it"
Not music to my ears but for the firsttime...I'd had someone attention.
Can anyonegive m specific labs that pointed towards weg. A neg ANA rule me out? I know the c anca will be most impt...forgot to mention RA factor was slightly elevated too but ESR and crp normal for inflammation.
On any given day I feel as tho I've been punched in the nose! Blowing my nose..HURTS ..in my head and my nose

[pberggren1]

Keep on irrigating your nose. Have you tried the Nielmed squeeze bottle package that can be found at most pharmacies? It works really good. And there is also a netipot witch is just natural flow and works good too. I personally use a Waterpik with a nasal attachment and find this works the best for me. I have always had alot of mucus production with lots of crusting and bleeding.

As far as blood work goes for diagnosis I am not totally sure. It was almost 8 years ago and I was so out of it and in so much pain that I cannot remember everything. But I am sure that ESR, CRP, and high C-ANCA helped lead them to a diagnosis.

I hope this helps.

[emg]

I use the new water pic nasal irrigator. I started of with the squeeze bottle but the battery powered irrigator has more force n gets lots of chunks out. I also use ponaris nasal emotient n find it helpful in softening the crusting. Question tho...my nose is 200 times worse if I don't irrigate...sometimes I wonder if I should LET it get this bad so the drs take me serious!

[pberggren1]

I personally would not let your nose get that bad just so the docs take you seriously. I myself do not want to go through any more discomfort or pain than is neccessary.

I too get lots of chunks out when I irrigate, especially in the morning. I use a product called Nozoil from a company called Rhinaris. It is 100% natural sesame oil and it works fairly well for me to keep things lubed up and moist over night. I also use a cool mist humidifier at night, I find this helps a bit as well.

[drz]

One of the specialties of the Mayo in Rochester is figuring out a diagnosis when no one else can. If you have Wegener's they can figure that out and also prescribe appropriate treatment. If it is not Wegener's or some other autoimmune disease they sound like your best bet to figure out what is causing your problems and to give you the right treatment. You don't need to know a diagnosis to go there for help. I don't know any psychological disorder that could account for your symptoms so believe it is safe to assume you have some medical problem that needs treatment. Good luck in getting help to find right treatment.

[Sangye]

Hi emg, welcome to the group. I agree that you need to get to Mayo or one of the other vasculitis centers asap. If it's Wegener's it can do tons of silent and permanent damage. I suggest you call them first thing Monday morning.

Meanwhile, you need to quit smoking. You're probably thinking dying young means a quick death, like getting hit by a bus. It's much more likely that a young female smoker will have a stroke and survive in an impaired condition. I know that's hard to hear and you can get mad at me for saying it, but it's the facts. You deserve to live a long life. Please take care of yourself.

[pberggren1]

I have to agree with Sangye emg. I have been around smokers all my life and have seen many smoke 50 or 60years or more, and it is not a pretty sight. Smoking does permanent damage to the lungs and brings many toxins into the body which are hard to get rid of and do much damage.