Dr won't test me for vaaculitis. What to do now?

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Hello my name is Matthew. I began having weakness in my limbs 4 months ago. I then experienced an inflamed esophagus, stomach ulcers, and an inflamed colon which was diagnosed by an endoscopy and colonoscopy. I have last 25 pounds since this all started. I am in pain and weak nearly all day everyday. My fingertips on my hands have become swollen and I can see veins that I wasn't able to see before. Just about a week ago I began having pulsations and pressure in my throat, ears (popping) and sinuses. I have headaches that are usually in the back of my head. I also have a pimple-like rash all the way down my right arm. I have severe pain in my kidney area as well. Anyways, I have had MRI's/CT scans of my head, neck, chest, and abdomen 4 months ago which all came back normal. I have seen a rheumatologist who ran blood work on me and said it looked good other than elevated enzymes in my liver. She now says based on my bloodwork I do not have vaaculitis or other auto immune diseases and she diagnosed me with fibromyalgia. I am not convinced I have fibro, because I have been on medication for it for a month and my symptoms have just become worse. I feel helpless because I can't see another rheumatologist for another 3 weeks and I am becoming much worse. What should I do now? ERs are useless for me because all they do is run more blood work then send you home. Does this sound like vasculitis to you all? And are angiograms helpful in finding vasculitis? I am worried it is attacking my GI tract and my liver. Now that i am having severe pressure/pulsations with from my neck up with headaches i am worried it has spread there as well. Thank you for your time.

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  • Posted

    yes I have vasculitis and it sounds familiar to me. Are you uk based? I am astonished on here to find so many people for whom vasculitis is ruled out on blood tests. Blood tests are only an indicator usually. Vasculitis is so often diagnosed on history. I am not sure where you are based - could recommend someone for a follow up appointment but my knowledge of uk hospital is best as I am in the UK. 
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    • Posted

      I am in the USA but I am willing to fly to the UK if it will help me get diagnosed. If you have any recommendations i would love to hear them. I am just running out of options and don't know what to do next. What tests helped diagnose vasculitis for you? I am very disappointed in my rheumatologist for dismissing me so quickly. I am sorry you have vasculitis and hope you are doing okay.

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    • Posted

      well not even sure it would help coming here. IT took over a year for me to be diagnosed and it was done on history. I also had some specific symptoms crop up during that time. I had a mild attack of uveitis for example and that helped with diagnosis. I saw an immunologist at the Royal London Hospital for about a year and a half before being diagnosed. 

      I am going to ask people in my help group who they might see in that area. I will post whatever answers I get. 

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    • Posted

      ok, the first name that has been mentioned to me is Dr Arthur Silverman at Scripps San Diego Rheumatology dept. I will see what other suggestions come back. 
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  • Posted

    Please look up the vasculitis foundation in the states....they will have a helpline and please speak to them. The one in the UK is brilliant. Very helpful. 
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    • Posted

      Thank you so much Margaret. You have been extremely helpful. I will look into Dr Silverman and the vasculitis foundation. If you don't mind me asking, what kind of vasculitis do you have? And are you expected to have a normal life expectancy? Best wishes.

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    • Posted

      yes I am expecting a normal lifespan. We never know what will happen and it is unpredictable. But with treatment I am now symptom free. And I have Behcet's specifically. Very particular symptoms. But mine are mainly neurological to be honest. A lot can be done for vasculitis these days. Please don't despair. But get a good doctor. I know another friend who lives in California and will ask him where he goes. Any other docs names I will post for you. 

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    • Posted

      That is awesome. So glad to hear you will be okay. You have really given me hope and I cannot thank you enough. It is tough living with this when you don't have a diagnosis, and all you can think about is whether your organs are being effected and you can't do anything about it. All I want to do is get tested for it. Blood tests are not enough for me, and I just worry that I will get diagnosed too late.

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    • Posted

      Matt, I am 53 now and probably had this as a child with a period of remission for a long time in between. Vasculitis can be very slow moving and I feel you are not in mortal danger .....you just need treatment to make you feel better. That is if it is what you have of course. I'm not qualified to make that  judgement. I hope you get a good doc on board soon to put your mind at rest. This illness is scary but there are treatment options out there. x

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    • Posted

      I am very happy that I posted on here. I wish I hadn't waited so long to do so. Thank you for all of the great information and reassurance. You spent time out of your day to help a complete stranger and I couldn't be more grateful for that. I wish you the best

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    • Posted

      you too. I just hope you get answers soon and you are a bit more reassured. I will post back again once I get any other doctor options in California. If you ever want to chat feel free. Take care. 
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  • Posted

    Dear Matt,

    Symptoms for Vasculitis covers many things as you list and with the rarity of it most Dr's have never encountered it.

    I had PAN whne i was 21yrs and the Dr then didnt know what was happening, it wasnt until i couldnt walk with teh pain that i was referred to a Specilaist and rushed straight into hospital.

    30 years later and now i have GPA, which i made sure that I steered the Dr's on teh right path as i knew what was happening to me.

    Both of these are initially controlled with steroid and then maintained with Imuran, I still have GPA and through all this has had a normal life with no sickness from work.

    Vaculitis is also very different in terms of different types and what it can affect, I would suggest that you get a second opinion or as suggest teh Vascuitis Foundation in UK or USA, UK are very helpful and they may also have contacts in USA.

    Let us all know what happens

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    • Posted

      Thank you for the response Phil. I'm sorry you have been hit with this disease, but am happy to see you are still abe to work and have a normal life. What tests are most useful in detecting vasculitis? I know biopsy is clearly the best way to know for sure. But what about an angiogram? I have been thinking about getting one without insurance because I do not want to wait for them to approve it or not. If not an angiogram, what else is useful in detecting this disease? Thank you for your time

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    • Posted

      Hi Matt

      Symptoms for both same,

      Night Sweats

      Pains in ahnds and feet transgressed to knees

      Lesions on elbows

      Weight Loss

      Loss of apeptite

      For PAN it affected my Kidneys and they confirmed with a kidney biospy and lesion biospy

      For GPA if affected my lungs, and upper respiratorty tract, I only found out that there was an issue when I had a perido medical at work and tehy found coin lesions on my lungs, it then progressed from February 2013 until full diagnosis in Noveber 2013 and the Specilaist confirmed GPA with ANCA test which came back positive, therefore 95% that is was GPA.

      Other Blood test can indicate Vasculitis but also other problems, such as raised ERS, CRP, which detect inflammation in the body.

      In essence ERS, CRP and ANCA will help to undertsand whats going on

       

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    • Posted

      I so agree with your comment. Symptoms are so wide which makes it difficult and confusing. I have mainly neuro type symptoms. Same blood work but not anca only mildly raised ers and crp. And sometimes thy are normal.

      It has been suggested I have menongoencepalitis from behcet"s which causes severe migraine. Can go on for weeks. Comes with a severe aura almost hallucinatory. Loss of balance feeling of being seasick. Dizzy spells fatigue. Electric shock type pain in my face, ear sometimes in my groin. Very high blood pressure becomes difficult to control in a flare. Muscular pain. Sweats. Mild joint pain for me. And for someone who has Behcet's I rarely have ulceration.

      I think that for everyone the symptoms can be different. Very wide ranging. I have also had skin rashes. Huge hive like lumps which are red fiery and itchy. It changes moves from one atea of body to another. Most bizzare ilness on the planet.

      I read that over and think wow. Thank god I have good treatment at the moment. I am currently very well with some issues but not that list. I run a business and have managed to stay in work. Please don't think your life will be over if you get a positive diagnosis. Oh also....add to those symptoms depression and anxiety. Strangely enough, that goes away with treatment! Not surprising people get depressed and anxious dealing with all that. Have a great day Matt and Phil. X

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    • Posted

      thank you both for your help. I finally got back my bloodwork where i was able to look at it myself, and I came across that my C Reactive Protein Inflammation was elevated to 3.4. It says that the range for a normal level is 0-3. Is that something i should be concerend about? I am now panicking because i feel like it means i could have vasculitis. I continue to feel very poorly, and i cannot get into my new rheumatologist for over a month and my regular doctor refuses to order an angiogram for me or refer me to another rheumatologist. I feel so helpless because i believe I know what I have, but I cant do anything about it, and I continue to feel worse. 
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    • Posted

      Please don't worry too much. I feel so certain that bad as you feel nothing dramatic will jappen in that timescale. I waited that amount of time for a referral and had bern off work for 6 months at that point feeling totally awful. Angiograms are always clear for me even with chest pain wheezing and heart palptatiins x

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    • Posted

      OK i will take your advice and try to relax. So angiograms arent a very good test to do for vasculitis? Which other tests other than a biopsy of certain organs are good to do to help detect this sneaky disease?
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    • Posted

      Matt,

      I dont think Angiograms are conclusive, CRP is a concern, but you also shoul dlook at other factors, ESR and if you have teh resilts which you should have is

      Hemoglobin and hematocrit. A low hemoglobin or hematocrit level suggests anemia, a complication of vasculitis. Vasculitis can interfere with the body's ability to make enough red blood cells. Vasculitis also can be linked to increased destruction of red blood cells.

      Antineutrophil cytoplasmic antibodies (ANCA). These antibodies are present in people who have certain types of vasculitis.

      Erythrocyte sedimentation rate (ESR). A high ESR may be a sign of inflammation in the body.

      The amount of C-reactive protein (CRP) in your blood. A high CRP level suggests inflammation.

      http://labtestsonline.org.uk/understanding/analytes/fbc/tab/test/

       

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    • Posted

      I so agree with Phil here. Angiograms would only show something if there was active disease affecting your heart at that point. There are all kinds of things which go hand in hand with auto immune disease which can cause chest symptoms like costochondritis or pericarditis. They can feel like hart attack to people who often end up in a+e because of them. I am not saying you have either of these but they are possible affects of systemic disease. 

      I know you're worried and can completely sympathise. A lot of symptoms are scary and not knowing what it is makes it worse. But you should try to stay calm...take the referral you get and discuss it all with a specialist. Keep a diary of symptoms. x

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    • Posted

      I should also add that I ingested cannabis a few days ago because I heard that it could help with my pain, and my symptoms got much worse. My pulsations, pressure, and weakness increased significantly. I also had to go to the bathroom about 9 times that night for over a minute long each time. My bowel movements changed to diareah (which I got in the past on occasion), and I developed a rash on my arm a couple days later. Have any of you heard of cannabis making vasculitis worse? I'm not sure if it can change your blood vessels or not, but I do know that it increased my symptoms dramatically.

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    • Posted

      Matt,

      Cananbis is not the solution, please dont take it as it will make you paranoid about your illness, albeit it may help the pain it doenst deal with the underlying cause. The Doctor wont be impressed.

      I never had any bowel issues with vasculitis.

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    • Posted

      Personally I don"t use it. Have heard of people using it for pain releif and that is their personal choice. I have tried it back in the day but it made me so sick ot wasn't worth it.

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    • Posted

      I definitely will not be using it again. Horrible experience, and it seems like my symptoms have become worse since I tried it. Another question if you don't mind me asking, if I had a CT scan with contrast, would that show blood vessels? I had one a few months back when this all started and the Dr said I only had a fatty liver. I was just wondering if a CT scan with contrast is the same as an angiogram? I have a vascular doctor looking over my CT scans as we speak. I also got an appointment with an immunologist at Stanford University on August 9. Crossing my fingers that she can figure out what is going on with me. Thank you both for your time I could not be more grateful.

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