Vasculitis?

Posted , 10 users are following.

This may be rather lengthy, but anyone who actually has vasculitis, I would love to hear from you.

Last fall I started experiencing a burning/aching type pain in my knees. It has since spread to my entire legs and my left arm. My sed rate has been elevated, although only a little. It was 36 last time it was checked, but it has been steadily increasing. After dealing with the pain for a few months I noticed I was starting to have heart palpiations and a fairly elevated heart rate when doing simple things, like walking or picking up after my kids. I also became extremely fatigued. I had a brain MRI back in February and the differential diagnosis on it was MS or vasculitis or chonic migraines. I do not have migraines. The neurologist I saw dismissed me as nothing is wrong and I probably just moved during the MRI.

In the meantime, my heart became worse and I had an echo done. My ejection fraction was 40% and I was diagnosed with cardiomyopthy of unknown origin. I was put on ACE inhibitors, but continued to decline.

Now I frequently experience severe pressure in my head. Sometimes I ca't hear anything because the pressure is so severe. My face begins to tingle and it feels like my blood pressure is very high, but most of the time, it measures around 95/60.

Last time I had it checked, however, it was 150/90 for nearly two hours, and then dropped back to normal. I have never seen it that high.

I also experience sudden, sharp pains in my hands, feet, arms, legs and head. They are very sudden, hurt very badly, and then are gone again.

Basically, what I'm wondering, is does this sound similar to anyone's experience with vasculitis? My ana was negative, as have been almost all of my tests except for the elevated SED rate and CRP. Any input is appreciated. It's been nearly a year and I am looking now setting up appoinments in two states outside my own to get this figured out.

1 like, 13 replies

Report / Delete

13 Replies

  • Posted

    hi last night my chest felt tight an i couldnt breath body felt numb an i couldnt move my legs . im just wondering if anyone can help or know what it is ..... chest is still hurting x
    Report / Delete Reply
  • Posted

    hi Marie, do you still log into the site? I have vasculitis and am happy to talk to you about it. Please message me if you ant to chat. 
    Report / Delete Reply
    • Posted

      Hello Margaret, I'm a new "victim" of vasculitis and they did a MRI without and with contrast. I actually went in for headaches to see if they are coming from my Hereditary sperocytosis hemolytic anemia. I was expecting them to find anything in my white matter. My question to you is about being on steroids and the aftermath of it all. Did your flares calm down? Did your headaches lesson or go away? Secondly, it seems like having an autoimmune disease invites other autoimmune diseases to pop up. Is there a connection? Hope to here back from you and or others willing to shed some light on this newbie.

      Thank You

      ~Artist

      Report / Delete Reply
    • Posted

      Hi to you and so sorry you have been diagnosed with vasculitis.

      I have rarely used steroid treatment. I found that they were not super effective for me and I am terribly reluctant to introduce them. Have only used on a short term basis.

      I think the answer seems to be yes to your question about whether auto immune disorders seem to be inter connected. But certainly there are many people who go along with one thing and don't have too many problems.

      I am currently on a treatment plan of mycophenolate and interferon. That keeps the dreaded migraine at bay.

      I have recently had an upturn in symptoms. I think for me, the mycophenolate is not working any more.

      Please be careful of long term steroid use. Tell me more about the headache that led to your diagnosis. What is a flare like for you? And are you in the UK or somewhere else? Margaret

      Report / Delete Reply
  • Posted

    Marie,

    I was wondering if Marie found out anything since I have some of the same symptoms.  I do not have a diagnosis of vasculitis, but I believe that is what I have.  My Rheumatologist disagrees, and told me I would have been dead in three months, he doesn’t have the best manners.  I’m not sure my Primary Care doctor and cardiologist believe the symptoms I describe.  Right now, I am just so frustrated because I don’t know where to turn.  Looking back now, I believe I have had symptoms for at least two decades, not knowing what it was. 

    I am a 49-year-old female.  Back in the mid 90’s, the skin on the top of my feet used to hurt.  But there was never any rash or irritation.  I assumed it was the way my boots were rubbing.  I then noticed that the skin on my inner thighs was frequently sore, but no irritation or rash.  Again, I assumed it was bad seams in my uniform.  Next, when I would run my fingers through my hair, my scalp seemed tender and sore.  Then it was the skin on my left inner forearm.  I went a few years in between without any symptoms.  Then I started to complain of chest pains, but no cause was identified.  By the year 2000, my knee joints were really sore and continue until this day.  In 2010, I started getting symptoms of dizziness, ….Fast forward in Aug 2012, I started having heart palpitations.  In 2013, the bottom right heel of my foot began to hurt.  I could not put weight on it, it felt like a vein was bulging.  It would last a month at a time.  Doctors would take blood tests but found nothing.  At night, my calves would hurt so bad, like the worse charlie horse ever.  My lower back started to hurt and cramps in my neck.  

    In the latter part of 2013, I started feeling little piercing pains in different parts of my body, like I was being pinched.  It would come and go.  I was told it was fibromyalgia.  By this time, I could tell the pain was coming from a vein, because I could trace it on my ankles.  In 2014, my ears began to feel pressurized or clogged, I was told it was allergies.  In February of 2016, I started having problems with my sinuses.  In June of 2016, I started having pain on my left side, I was told it was flank pain; I believe that pain has now moved internally to an organ, as the pain is no longer close to the skin surface.  I am having stomach pains.  In December of 2016, the pain started feeling more like a burning pain in my arms that would come and go.  I also started feeling pins and needle type pain in my fingers and in between my toes.  Again, the pain comes and goes.  I do not take any medication for the pain because it does not stay long (Although my rheumatologist did prescribe tramadol).  In January 2017, I started having really bad heart palpitations with even the simplest tasks, like walking up the stairs.  I have pain in my chest which feels like it is definitely in the branches of my veins/arteries.  I believe now my eyes are affected, they are painful, very itchy, red, and have veins that seemed to be constantly inflamed that I keep thing I have a hair or an eyelash in my eye.   I have this pressure at the lower back of my head.  I can also feel it in my throat (both inside and on the skin) for the past several days.          

    I am constantly told that I am depressed or have anxiety.  I have had several echo cardio, an MRI of the brain, sometimes my liver panels (AST/ALT) comeback high.  Then it is normal the next time.  The same thing with the kidneys.  My last tests in Dec 2016 shows normal C3, C4, ANA.  MY RF is elevated 44, ESR 36, and CRP is constantly up and down.

    Report / Delete Reply
    • Posted

      Hi Kim...yes I have a form if vasculitus and you are describing the symptoms. Your rheumy who said it would kill you in 3 months. He is just rubbish din't see him again. Get a new doc. I was diagnosed in my 49's and have had it most of my life since I was a baby with periods of remission.

      What you need to do is this....if you live in the US contact The Vasculitis Foundation of America and ask advice on where ti find a good doctor who knows this subject well. If you are in the UK tell me what area and I will see if I can find a name to give you. X

      Report / Delete Reply
    • Posted

      I have been diagnosed with lividoid vasculitis. Although I am not sure of that because it has spread to upper thighs, stomach, chest, arms. My blood tests are normal as well. It started in my calves. It took nearly 2 years to get a diagnosis. The only treatment I have had is I take an adult aspirin a day. I have congenital heart disease as well. I recently found I require surgery for 3 heart valves. 2 were anatomically normal at birth. I also have high function heart failure which can be related to inflamed veins. I am thinking the vasculitis has contributed to my decompensating heart valves. Anyone else have valve issues?
      Report / Delete Reply
    • Posted

      Actually, it may be the opposite, that your heart disease may have caused the vasculitis, or vasculitis can be caused by many other causes including infections and autoimmune disorders (your sed and crp being high). 

      Its good your taking aspirin, because this kind of vasculitis has coagulant pathogenesis, and other inherited hypercoagulable states have been linked to this. 

      You might need hyperbaric oxygen therapy to counter the ischemic state in your body. Has your doctor suggested this ? 

      Report / Delete Reply
    • Posted

      No, I have never of hyperbaric oxygen therapy. No treatment has been suggested. Thank you very much for this information. I will talk to my rheumatologist when I see him in July.
      Report / Delete Reply
  • Posted

    My friend was also suffering from the same situation as like you have. He consulted it from the best specialist with proper treatment and care which reduces his problem very much. You should also consult from the specialist as there are now many advance treatment available for leg problem. Take care.
    Report / Delete Reply
    • Posted

      Do you know what type of specialist he saw? I have seen 3 dermatologists, 2 cardiologists, 2 vascular surgeons and a rheumatologist. I have kind of given up hope of a definite diagnosis or any help. I have lost 60lbs and it seems to have improved somewhat.
      Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up