Scared to death

2 Years ago I was sleeping 12 hours a day, gaining weight and tested and confirmed I was hypothyroid. Been struggling with right meds for a year. This March, After feeling terrible and realizing I had had a 10 month bout with sinus infection leading to a monthly chest infection and tons of anti-bodic I changed doctors and was placed on juice plus, B with metifolin, D, pro colorectal (first milk from mother cows compounded) and sent to an immune doctor and lung specialist. Immune Dr pronounced me with Vasti saying my scores of 1:80 (I live in europe) were high enough to confirm. Lung Dr said differently and tested urine, chest and nasal Xray, kidney scan, (all of which were fine) more blood test and score was down to 1:60. He checks it every 3 weeks. Just got a call and said the score was up again(even thought I feel 100% better). Now he wants me to go to a sinus doctor and I am waiting for the call for the appointment. I believe he wants a test on my nasal plops. He is always re-asuring and told me not to read about Vasti until he is sure. I had to read...I found you all! Just feeling scared and worried...

17 Replies

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  • Hi dskizs,

    The sinus doctor might find the answer. I'm going out now for the evening but if you would like to send me a private message, teliing me more about yourself, how old, where you are & where you get your treatment, then we can talk later.

    Tell me all your syptoms, even if they do not seem important. I do not understand what 1:80 is referring to?

    John

  • Dear dskizs,

    Sorry to hear about your problems. I don't know all the terms used, by you, either. I can assure you that you can trust John, he is a genuinely kind caring man. There is also a 'roadmap' for vasculitis available, again ask John.

    I wish you well (some hope!)

    Best wishes

    AndrewT

  • Thanks for responding. He seems quite knowledgable and has responded as well. I will definitely ask about the road map.

  • Hi dskizs,

    From reading of my recent experience of being diagnosed/treated for CSS (Churg Strauss Syndrome)

    vasculitis-uk.healthunlocke...

    .. you will realise that many of the symptoms you relate are similar to mine (antibioticcs do NOT clear up what is thought to be a chest infection .. there is 'something' else going on here).

    You definitely need to get blood tests to show the Eosinophil levels show there is a problem, and also the CRP (inflammation levels) are showing as high. The real test is to get a biopsy done to confirm vasculitis .. then it is definite. And steroids plus immunosuppressive drugs should be started asap. I'm not sure what the European 'score' is measuring, but I guess it is an indicator of the 'level of activity'.

    For CSS, the average age is 50 so typical age at diagnosis is 45 - 55. What is your age .. if it is in this range .. then....

  • I am off to the ear nose and throat doctor. Saw him yesterday and he wants me back with my ct nasal scan. Said why do a biopsy when one is done during sinus surgery to remove polyps. So have my ct scann and taking off to have a meeting now. 2 years ago another sinus doctor said it should be done due to all the sinus infections. I will ask him about the blood test. I feel like a pin cushion lately. I am 61 years old. Yes the age is a little out of research range but symptoms have been around for at least 3 years. The challenge is that I leave for USA tomorrow and will be in touch via email with doctors here. Thank god for blue cross blue shield. My insurance company. More to come.

  • Regarding the age range suggested (average age is 50 so typical age at diagnosis is 45 - 55.),

    I am well out of that range at nearly 71 when diagnosed in April, so it is only a 'typical' figure. Thinking back over various strange and apparently unrelated symptoms that I've had over the years, I'm now beginning to wonder if the CSS was 'bubbling away' in the background for many years. I've been looking at the consultants letters sent to my Dr which I get copied on and see over the last 7 years. ...

    - 2006 ... multiple systemic symptoms & raised inflammatory markers. But never found anything wrong that needed treating, apart from .....

    - 2006 ... Atrial fibrillation diagnosed (heart condition that causes an irregular and often abnormally fast heart rate)

  • I have a few questions. Since the dr is going to wait for serious symptoms I am trying to be in touch with my body and recognize new pains and aches. What is drop foot? The balls of my feet hurt often and my second toes on both feet hurt. Is this drop foot? I now notice I have this funny feeling below my knees like I am wearing knee socks and there is a band. At night I wake and have to stretch my legs and point my toes. What is that? Also since my biopsy was inconclusive should I redo it with another doctor? What about cholesterol have you ever heard of V causing high cholesterol ? Have you ever heard of someone having low levels of ANCA scores that could be related to something else? Sorry to bug you. It is just 3 doctors have said I do not have it and yet the ANCA scores are low and the biopsy was inconclusive.

  • Hello,

    Here are the answers to your questions ...

    1) Foot drop is caused by neuropathy damage in the legs/ankles and is well described in this article about Churg-Strauss ..

    cssassociation.org/symptoms...

    "Patients more commonly have problems associated with the peripheral nervous system, such as peripheral neuropathy, including mononeuritis multiplex. Symptoms occur in the limbs and include feelings of numbness or hypoesthesia, and hyperesthesia , which is an increased sensitivity to any stimulation and can be experienced as tingling or a burning pain. Other symptoms include abnormal sensations, and difficulty in moving a part of the body.

    Some people experience foot drop. Patients with foot drop cannot lift up the ankle, straighten or extend the toes, or turn the foot outward."

    2) I now notice I have this funny feeling below my knees like I am wearing knee socks and there is a band. At night I wake and have to stretch my legs and point my toes. What is that?

    .........- another example of peripheral neuropathy

    3) Also since my biopsy was inconclusive should I redo it with another doctor?

    ............- what Type of vasculitis do you beleive that you have? Having a positive biospsy will only confirm that you have vasculitis, but not what type you have. For CSS, about 95% of patients have had adult-onset asthma, so that is a key marker .. have you had asthma confirmed in the past?

    4) What about cholesterol have you ever heard of V causing high cholesterol ?

    ............... I have no idea about that

    5) Have you ever heard of someone having low levels of ANCA scores that could be related to something else?

    ...............- I can only speak about CSS where about 30% (althogh different studies vary with this) of patients test -ve for ANCA, and I am one of those.

    Have you checked all your symptoms against the vasculitis types listed in the Route map document?

    Some symptoms encountered, specific to various systems are:

    Respiratory system - breathlessness, wheeze, dry cough or coughing up blood,

    ENT (Ear, Nose and Throat) - hearing problems (deafness and or noises in the ear), nasal crusting, nose bleeds, sinus pain (which may be felt as headaches or pain in the face) or hoarse voice,

    Skin - rashes, ulcers, and necrosis (death of tissue),

    Eyes - red (blood shot) eyes, painful, dry or gritty eyes, visual loss or other changes in vision,

    Joints - arthralgias (pain in joints), and joint swelling,

    Nervous system - loss of sensation, weakness, unusual painful symptoms in the hands and feet (hotness, pins and needles or “electric shocks”) and rarely paralysis or stroke,

    Gastrointestinal system – diarrhoea, bleeding and abdominal pain,

    Kidneys/Renal - initially no symptoms. However urine dipstick tests will indicate problems with minute amounts of blood or protein in the urine. Occasionally blood may be seen in the urine (red or brown

    urine) or the amount of urine produced may suddenly reduce or stop altogether.

    vasculitis.org.uk/about/rou...

  • Thank you john. I think I told you I am 61. The strange sensation around my knees and the backs is what I hated to hear. At night the right one is so painful in the muscle I have to pick my leg up to roll over! Ouch. I have an appointment with a new internist Monday October 11th. My lung dr has sent her all my paperwork. Since it is in German I would like to be able to speak to her regarding my scores you mentioned. I plan to run off the copy of your response so I have the right terms. Is there any other scores I should request translation of? Then I will email you the results. I will check out the route map document. where can I find this? In response to your question above, I had a bout with asthma about a year ago when the chest cold would not go away. Presently no. No coughing, eyes dry and need to wear my glasses more often. Stomach fine no problems, kidney fine and lungs fine. Lung dr did urine test and nothing. No pain In hands just the second toe of each foot and this weird sensation around my knees. Ok will look forward to hearing back. That's for helping me.

  • Well had my first biopsy and OMG. NEVER again....I told him if he has to do this again knock me out. REALLY...shots in the nose and then carving a piece of it out and mean while I am bleeding down the throat and nose at the same time...I thought I would pass out. I have read so many of the testimonies on this site and am amazed at the courage and determination these people have displayed. AND YOU! Mercy me I am a BIG baby when it comes to surgery, shots and well any doctor related ordeal...ok so cross fingers. Biopsy comes back Monday...As you said...both doctors think I do not have it. It was just the immune doctor but in the back of my mind I reviewed my history as you have and see so many connections to this disease...YET, I still am hoping they are right.

  • We look forward to hearing the biopsy result on Monday.

    Mine was two deep samples on the back of my leg under local anaesthetic, and I still have to attend my local medical centre for the nurse to clean and redress it twice a week even after 6 weeks. But the wound is slowly getting better.

  • Omg. Please not the nose. It is dripping blood and I have to go back n the morning. I bet he cauterize it again. I have to fly out of here Friday. Personally I prefer the blood verses the shot and cauterizing again. Cross fingers. Thank for the support.

  • Hi dskizs,

    I'm so sorry your nasal biopsy is still hurting you, but you can be confident it will soon be better. I remember mine well - how could I forget the taste of the anaesthetic and the pain, the watering eyes... :-(

    It was about a week before it healed up; in the meantime I had many nosebleeds too. When you are feeling very ill, this is the last thing you want!

    However it is such a useful test as the laboratory will be able to see if your eosinophil blood cells have been departing from the blood vessels - this is called extravasation - and congregating in the surrounding tissues. Eosinophils were so-called as they were discovered to be easily stained in the laboratory, by a substance called Eosin. Your tissue samples will be tested in a similar way. Eosinophils are your body's defence against viruses and invasive fungi such as Aspergillus.

    If they find the eosinophils in your sinus tissue, it is an important sign to confirm that you have the Churg Strauss syndrome, and then you can be given the best treatment and start to recover your normal life.

    Before my Churg Strauss started to make me very ill, I found I was reacting badly especially in my sinuses and lungs, to fungi growing on damp building materials, and laser-printer & photocopier emissions -all in my workplace. It would be interesting to know if many Churg Strauss 'owners' like you, Jonty and me, have been exposed to these things!

    All the best!

    Rob.

  • Wooo great information. I just landed n USA and after 3 days blew my nose! I feel like it is healing well. I should know by Tuesday or Wednesday of next week what they find. As general E lee once said "surprised but not taken by surprised" this why I am reading and doing my homework. Everything I have read has said if you get it early it is easier to manage. So I am crossing my fibers. I really need to get the lab results so I can ask the right questions on this site. I appreciate you communicating with me and the information you have given is very helpful. I feel like I know more about the test now. I will keep you posted.

  • Ok I am back. 3 months and here is what I know. Biopsy was inconclusive. But between me and the universe it was not a proper biopsy. No kidney problems from CT scan no reumetiod problems. So why is my c ANCA score 1 to 60 which I am told the score most people have when on meds. Dr said wait till I have inflammation or problems with lungs and asthumi or remitoid or kidney be cause med are damaging. Is he on track?

  • ANCA results are an indicator of vasculitis activity but not reliable - you can have a high ANCA reading & no problems and a negative reading and have severe active disease. Churg Strauss that Jonty mentioned previously is very rare and not always ANCA +ve, but as he said, it can show raised eosinophils in the blood. It is almost always associated with asthma.

    The best indicator of vasculitis activity is the BVAS score (Birmingham Vasculitis Activity Score). This is universally recognised and any doctor dealing with vasculitis should know all about it. Biopsies can be very informative, but you have to get a piece of tissue that is affected. Usually, these disease processes only affect part of the tissue & the rest is fairly healthy. So if you miss the diseased part & get a healthy bit you will get a negative reading. For that reason, it is usual to take samples from more than one site.

    A scan of the kidneys is not the best test. You can usually learn a great deal from blood results and if in doubt, guess what, a kidney biopsy!!!

  • Ok here is the scoop. My lung doctor said "done. Until you have more symptoms showing I will not prescribe meds since they are very strong and can cause other problems." He said we will wait. Mean time. I had to find an internist for a family doctor for cholesterol meds. She is a naturalpathic doctor that specializes in diabetiese. I go Monday. I am taking my lung X-ray, my kidney scan, my sinus scan and all blood work from 3 doctors and biopsy results from my nose by the ear, nose throat doctor. What I hear you saying is: 1) asks specifically what type of vasculitis does the immune doctor say I have 2) what are my scores 3) please test for vasculitis activity is the BVAS score 3) what does the blood work say about ANCA +ve, and eosinophils in the blood. 4) what else? Hope to hear from you before Monday. Oct 14th. Thank for helping me. Oh by the way. Just got the worse chest cold. I have not been sick since march and this weekend in the rain came down with sinus and chest cold. Had to start asthma breather and steroid nose spray to fight off a severe infection. With all the natural meds I think after 4 days I beat it. Still infection and swelling in sinus and congestion in chest but breathing better due to inhaler. But still signs of the times I believe.

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