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Thread: I don't know what to do

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    Default I don't know what to do

    Hi everybody,

    My name is Jake, I'm from the UK and I was a typical 21 year old student up until a couple of months ago.

    It all began back in May when I suffered with a bout of what I thought at the time to be acute sinusitis. I also developed a tingling sensation in my feet that was most noticeable when sitting down, which I thought to be a little strange but just put it down to having a viral infection and got on with my normal every day routine.

    However three months later my symptoms have progressed and I am now extremely anxious and fear there may be some underlying condition that is more sinister than a simple viral infection. I've been to visit my doctor on numerous occasions to express my concern about possible vasculitis, but she is quick to dismiss me as my inflammatory marker blood test returned normal. She hasn't tested me for ANCA and doesn't feel it is necessary as my inflammatory markers came back normal (what exactly that included hasn't been specified) and stresses they would not if I had wegs or any other form of vasculitis. I've been given nasal spray called fluticasone and sent on my way.

    I feel absolutely helpless at the moment, am I being paranoid? Are my doctors just not taking me seriously enough? I'm posting here in hope some of you may be willing to share your opinions so I can decide what to do next. Here is a list of the symptoms I've been experiencing:


    • - Tenderness & slight swelling of cervical lymph node on the left side of neck
    • - Heavily inflamed lump in left nostril (visible when looking with a flashlight), rock hard to the touch. Doesn't appear to have responded to steroid nasal spray.
    • - Unilateral nasal blockage that seems to alternate nostril on a regular basis
    • - Occasional facial pain under the eyes
    • - Peripheral neuropathy, mostly tingling sensations in the lower legs/feet & body-wide muscle fasciculations. Occasional numbness and extreme sensitivity in different areas of my body
    • - Often hack up thick, almost jelly like mucus, mostly in the mornings. Has had small streaks of blood on a couple of occasions
    • - Occasional joint pains, almost feels like a cramping sensation but it's in the knees/elbows
    • - Occasional dried up 'blood boogers' from my nose
    • - Sore throat that seems to appear and disappear out of the blue on a regular basis
    • - Spontaneous pneumothorax (collapsed lung) approx. 1 month after initial symptons begun, not sure if it's related as I have suffered with this once before a couple of years ago and reoccurance rates are high
    • - Dry/burning eyes


    Thank you all so much for taking the time to read my post, and my heart truly goes out to you all!


    Jake x

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    Welcome Jake, for what it's worth...you've come to the right place to get experienced info & empathy & understanding. Both sorry & glad you're young...younger peeps seem to battle and recover better than us oldies. Most of your described symptoms fit WG...and it's advancing as the blood, mucous, and sinus activity increase. You need docs who get WG, know the protocols, and will stand by you at all times, any time. There's lots of peeps from England on here, they should chime in soon and help direct you to more successful and knowledgeable docs & protocols. Best to you, get on the right path & tho it's a long road, you will do well.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Hi Jake,

    What got you started looking into Wegeners? It's so rare you probably didn't stumble upon it on your own and ask the doctor about it. I'm guessing it was the comment by your doctor. With that in mind, you need to ignore the doctor's comment that it probably wasn't WG, and insist on further testing for WG. Don't wait. WG won't wait. If the c-ANCA test is negative it doesn't mean you don't have WG. If it's positive then WG is very likely.

    Read this:
    Granulomatosis with Polyangiitis (GPA/Wegener?s)
    then return here to ask more questions.

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    Hi Don & Birdie, thanks for getting back to me. I actually did stumble across Wegener's myself after an unhealthy amount of googling chronic sinus issues and peripheral neuropathy. Vasculitis was one of the the only conditions that appeared to have a link between the two, and both Wegener's & Churg Strauss caught my attention as I feel the majority of my symptoms at least partially fit the bill for those conditions.

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    Quote Originally Posted by Sladey View Post
    I actually did stumble across Wegener's myself
    Wow, that's some good detective work. I spent 4 months with numerous doctors, prescriptions, physical therapy, labs, scans, etc... and nobody, including me and my RN wife, ever came up with a vasculitis link.


    Now more specifically, your original questions:

    1) I feel absolutely helpless at the moment, am I being paranoid?

    Answer: No.

    2) Are my doctors just not taking me seriously enough?

    Answer: Possibly. The symptons you describe are serious so kick the Doctors in the, how do you say it over there, uhm, arse?

    Now I'll do my broken record imitation:

    "insist on further testing for WG. Don't wait. WG won't wait."

    Hey, and don't get too concerned while you're taking immediate action, it could be all unrelated and not even a serious health issue. But you don't know that, yet, so don't ignore it, don't wait.

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    Hi Jake. You are not being paranoid. Inflammatory markers are good to watch but they are not definative. Any one person can be very sick and still post some pretty good numbers- I am one of those.

    A more definative test for WG is biopsy. This would be of your sinus and / or lung- or kidney if you had involvement there. For a small number of people even THAT is not definitive and it takes a very experienced specialist to then give an accurate diagnosis.

    You have not mentioned what kind of doctor you are seeing. Many people here and with other rare conditions have had trouble getting proper care until they saw the proper specialist. If you do have Wegener's or another vasculitis you need to see a Rheumatologist - preferably a good one. Why not start with the best? You have some great specialists there in the UK , if you tell us where you are I'm sure someone here can steer you to the best specialist near you. I know you have one of the top experts in Dr David Jayne at Addenbrooke's. Any chance that you are near there ?

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    Quote Originally Posted by me2 View Post
    A more definative test for WG is biopsy. This would be of your sinus and / or lung- or kidney if you had involvement there.
    In my case the tissue biopsy was gums. Most of the soft tissue in my mouth was ruined. Looked almost as bad as it actually was. The biopsy claimed only two possibilities, WG or pyostomatitis vegetans, with positive c-ANCA confirming WG.

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    Hi Jake,

    UK calling! I live in Essex and am fortunate to be treated at Addenbrookes in Cambridge. The Vasculitis team there are superb and i know of other weggies who have been referred there successfully. In the first instance i would contact John Mills of Vasculitis UK. John is the Chairman and has had WG for many years so he knows exactly where you are coming from. John will be able to direct you to your nearest WG specialist for a definitve diagnosis.

    Reading your post strikes me that you are keeping precise notes which is so important when you are seen next. As the other guys have stated, getting a diagnosis is the most important thing, idealy before any lasting damage occurs. WG can move very quickly so dont sit on your hands.

    Blood tests are only part of the diagnosis, in fact when i visit Clinic they are more concerned about "how I feel" and what symptoms i am experiencing.

    Good Luck Jake and msg me if you want to discuss any aspect of your illness and please get in touch with John.

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    Thank you for the replies guys, my family home is actually in Cambridgeshire not far at all from Addenbrooke's so I feel very lucky in that respect. My only concern is getting a referral to the right specialist proving difficult when my doctor doesn't seem to be as concerned as I do. Maybe I just need to drop the nice guy act and be a little more demanding with her.

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    Quote Originally Posted by Sladey View Post
    Thank you for the replies guys, my family home is actually in Cambridgeshire not far at all from Addenbrooke's so I feel very lucky in that respect. My only concern is getting a referral to the right specialist proving difficult when my doctor doesn't seem to be as concerned as I do. Maybe I just need to drop the nice guy act and be a little more demanding with her.
    Sometimes you gotta do what you gotta do...
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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