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[SIZE=2]undefined[/SIZE][COLOR=DarkRed]Hi. I am brand new to these boards and feeling a bit sheepish about posting. But, here goes: I want to 'briefly' describe my situation. Beginning in 1998 at the age of 39, I began experiencing muscle pain/weakness; rashes; mouth ulcers & gum pain; fatigue; painful swellings on upper arms and upper thighs and left side; skin lesions; low grades fevers, etc. I finally saw a doctor and was referred to a rheumatologist. I had an ANA test done which was negative and an ESR (sed rate) which was 78. I did not know at the time what either of these tests were for. I had several more ANA tests done over many months and all were negative except once it was a weak positive for "speckled pattern." I kept hearing I did not have lupus, blah, blah, blah. I became so frustrated at not getting a diagnosis that I decidied I would try to "live" with my symptoms in the hope that they would eventually go away on their own. (HA!) By 2001 my symptoms had become pretty intolerable and back I went for more tests. By then I was having severe leg pains and had developed perforation of nasal cavity aka "saddle nose deformity;" nasal ulcers; ear and throat pain (not earache); shortness of breath; nerve problems; etc. I was finally told my 'condition' mimicked lupus and Wegener's Granulomatosis, but I was not diagnosed with either. Instead I'm told that autoimmune dieseases can "cross over" and I'm considered as having "autoimmune diisease not otherwise specified" with vasculitis. I have also had severe anemia requiring blood and iron transfusions, but that is mostly due to abdominal "bleeding angiodysplasias." (4 tangles of leaky blood vessels). I'm sorry this is so long--I've never been accused of brevity!! In summary, I will just say that PAIN rules my life and is truly a 4-letter word. I'd love to hear from ANYONE who can relate! [/COLOR] :yawn: :confused:
[SIZE=2]Hello!! Thank you for your kind words. It is so comforting to know there are people out there who care and want to assist in any way they can. As far as my rashes, the "main" one is on lower back (middle). It keeps recurring and is alternately painful and itchy. It looks like a bunch of red dots. I am not under the care of a dermatologist even though I also have skin lesions (some 'round," some patchy/scaly/itchy) on arms, lower legs (front & back) chest; shoulders; upper back. I am not currently on any treatment. I have resisited taking prednisone even though my symptoms have very slowly but steadily worsened over the past 6 years. I have a history of morbid obesity and lost 100 lbs in 2000 due to illness. I am terrified of regaining weight. I am not even under the care of a rheumatologist at present because there are none in my city who accept Medicaid in their private practice. I would have to go the charity rheum. clinic and it's hard to get an appt. there and you never see the same doctor. I always got stuck seeing one particular rheum. who I had no rapport with whatsoever. I see a private gastroenterologist who treats my anemia due to bleeding angiodysplasias (he diagnosed). He also treats me for IBS (I take kristalose) and GERD for which I take asiphex. The only other doc I see is my primary care. I am being treated (inadequately) for pain. I take percocet:10/650; Vioxx and tramodal. I have abdominal swelling due to vasculitis and I have developed very painful swelling in "nether-region." For this I have to use a heating pad which is probably going to worsen the vasculitis since heat dilates the already inflamed blood vessels. I have been referred to an ear/nose/throat doctor and neurologist but have yet to go. As far as being "diagnosed" with autoimmune disease not otherwishe specified, I am actually okay with that. I have a first cousin in town who is a gyn. oncologist and although it is not his expertise, he agrees that autoimmune diseases can "cross over." I used to be upset that I didn't have a "definite" diagnosis of lupus or Wegener's Granulomatosis, but I consider vasculitis to be my primary diagnosis since most of my pain stems from that condition. I hope you all don't think I am "playing games" with my health by not getting treatment. Early on I was very agressive in trying to get a diiagnosis and treatment. I was 3 years into my "medical mystery tour" before I finally got 'answers.' By then I had become resigned and had mostly "given up" hope of ever being healthy again. I guess it sounds like I've thrown a Pity Party for myself, but that is not the case. I just do my best to get through each day and night. I am on disability now so there is less stress. Thank you for "listening" and caring!!![/SIZE][COLOR=Navy]undefined[/COLOR]Hello! Thank you for your kind words. It is so comforting to know there are peo
[SIZE=2]undefinedHi Vee. "Saddle nose deformity" is actually a perforation of the nasal cavity. It is called "saddle nose" I guess because a "BUMP" (nodule?) forms on the bridge of the nose that reminded someone of a saddle with the "hump" you hold onto (sorry, I have not ridden a horse since I was a child). Anyway, if you do an online search of saddle-nose, you will get more info. An MRI showed I have "thickening of the sinuses," and I have "nasal crusting" and ear and throat pain. These are consistent with Wegener's which is related to vasculitis. I have symptoms of BOTH WG and lupus, but like I said, no positive blood work significant to either condition!!! (AAAARRRGGGHHH!!!) I eventually want to get this "bump" on my nose taken care of as it is painful. Not looking forward to any possible surgery on nose though (yikes). I have painful "redness" on inside and outside of both ears. My ears hurt so bad most nights (NOT earache) that I can't press them against pillow! (or hold phone to ear for any length of time.) Also have painful "nodules" (tiny) on forehead, :rolleyes: and "scalp tenderness," -- has increased in severety over the years as have all my symptoms. Medical Mystery Tour is neverending!!!! [/SIZE][COLOR=DarkSlateGray] [/COLOR]
[SIZE=1]No I have not had a biopsy yet of the painful "bump" on bridge of nose. :confused: I have been referred to ENT and neurologist but have not gone. I know ALL about Wegener's since I first heard I had "symptoms" of the condition. I got a lot of information from WG Association, Int'l. WG can progress slowly or can be swift and deadly (just like lupus). The vasculitis I have has slowly but surely progressed over the years (since 1998). I'm told I have symptoms of both lupus and WG but blood work is not specific for either condition. :nono: I have sinus, ear and throat pain and respiratory problems. Also have "crusting" in nose passages. I really am not bothered by the fact that I don't have a 100 percent diagnosis of either condition. I have a cousin in town who is a gyn oncologist, :p and although it is not his expertise he agrees that autoimmune diseases (symptoms) can "cross over" and be hard to pinpoint a particular one. :dizzy:
By the way, what part of Calif. do you live? I grew up in Ohio and Calif. (Canoga Park, Torrance, and Lomita) and have 2 brothers still living there. :wave: [COLOR=DarkSlateGray]undefined[/COLOR]wl [/SIZE]
[QUOTE=NOTSONUTSO][SIZE=1]No I have not had a biopsy yet of the painful "bump" on bridge of nose. :confused: I have been referred to ENT and neurologist but have not gone. I know ALL about Wegener's since I first heard I had "symptoms" of the condition. I got a lot of information from WG Association, Int'l. WG can progress slowly or can be swift and deadly (just like lupus). The vasculitis I have has slowly but surely progressed over the years (since 1998). I'm told I have symptoms of both lupus and WG but blood work is not specific for either condition. :nono: I have sinus, ear and throat pain and respiratory problems. Also have "crusting" in nose passages. I really am not bothered by the fact that I don't have a 100 percent diagnosis of either condition. I have a cousin in town who is a gyn oncologist, :p and although it is not his expertise he agrees that autoimmune diseases (symptoms) can "cross over" and be hard to pinpoint a particular one. :dizzy:
By the way, what part of Calif. do you live? I grew up in Ohio and Calif. (Canoga Park, Torrance, and Lomita) and have 2 brothers still living there. :wave: [COLOR=DarkSlateGray]undefined[/COLOR]wl [/SIZE][/QUOTE]

Hi!

I am glad that you are fully aware of WG, and that you received helpful information from the Association. It must be comforting to have an expert physician in the family! Even tho his expertise is OBGYN, oncologists are very sharp! He must see a lot in his practice! You certainly have been dealing with this for a long time. Has the vasculitis actually been determined? I see where some patients are referred to hematologists and, for lung problems, like sarcoid and/or WG, referred also to a pulmonologist. I went looking on the net with regards to your symptoms. One that my doc screened me for was Sarcoid. Have you ever heard of it? It is another granulomatous condition, like WG, only I'm unsure if it causes saddle nose deformity. If affects the lungs: Shortness of breath, chronic cough, skin rash, weight loss, fever, fatigue and more. Chest Xray is done to see if shadows (fluid), like lupus can indicate on Chest Xrays. Sarcoid affects each one differently. It can even clear itself up. Those who receive treatment respond well to prednisone.

Another condition that causes saddle nose deformity is [B]relapsing polychondritis[/B]. Have you heard of that? Symptoms are as follows:

sudden pain in the inflamed tissue at the onset of the disease.
Common ones are as follows:
pain
redness
swelling and tenderness in one or both ears, the nose, throat, joints and/or eyes
Fever
fatigue
weight loss often develop
"[B]Inflammation of the ears and nose can cause deformity (saddle nose deformity [/B] and floppy ears) from weakened cartilage. Impaired hearing, balance, and nausea can be caused by inner ear inflammation. Inflammation of the windpipe, or trachea, can lead to [B]throat pain,[/B] hoarseness, and breathing difficulty. This is a potentially dangerous area of inflammation in patients with relapsing polychondritis which can require assisted breathing methods when severe. Joint inflammation (arthritis) can cause pain, swelling, and stiffness of the joints, including of the hands, knees, ankles, wrists, and feet. Eye inflammation can be mild or severe and can damage vision. Cataracts can be caused by the inflammation or from the cortisone used to treat relapsing polychondritis (see below). Other tissues that can develop inflammation include the aorta (which can lead to aneurysm or aortic valve weakness), tissues in or around the heart (myocarditis and pericarditis), the skin (vasculitis), and the nerves from the brain (cranial nerve palsies). "

Diagnosing: Relapsing polychondritis is diagnosed when the doctor recognizes the classic pattern of cartilage involvement. The symptoms described above can suggest the disease. There is no one specific test for diagnosing it. Blood tests that indicate inflammation, such as an elevated erythrocyte sedimentation rate (ESR), C-reactive protein, and others, are characteristically abnormal. Cartilage biospy.

Well, anyway, that is another autoimmune condition that can be overlooked and I thought I'd put that out there for you to review--if you haven't already.

Yes, isn't that the pits that autoimmune are so difficult to dx and there can be more than one with symptoms overlapping! We've screened for many that can affect the eye. Still in limboland! Are you getting any type of treatment?

Currently, I'm dealing with edema that seems to be progressing daily with an increasing blood pressure. I'm going to try eliminating the anti-inflammatory medication first to see if I get some relief. I'm hoping that does the trick and it isn't a new symptom. I would really like to know the cause so it can get treated. My vision is affected and I'm feeling pretty uncomfortable right now! Today was kinda rough. But I'm learning lessons through this. It forces one to enjoy the good moments regardless. :D

I'm not near the areas you mentioned but further North. I've seen Ohio before and I thought it was lovely with rolling green hills and beautiful farm houses! There are lots of charming towns with gorgeous old-fashioned homes like Carollton! Are you in Ohio now?

I hope you're having a good day! :)

Hugs to you! Cal Sun :cool:





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