Early vasculitis?

[UnderstandU]

I have worked in hospitals for 20 years and have taught at USC.  I have treated thousands of patients in my career.  I have had mild symptoms for several years that would come and go, such as:  blurred vision, pain in the kidneys, and  difficulty concentrating.  These all seemed to occur together especially when I was more fatigued at the end of a work day, so I suspected some systemic inflammatory condition may be the cause.  I also had occasional chest pain and leg pain especially in the cold or at night.  There were gradual but obvious changes in my legs with slight discoloration  and swelling in the vessels in the legs, rare lightheadedness, mildly increasing fatigue and occasional sharp pains in the sides of my head.  The medical work up was all negative except for blood in the urine for unknown reasons. My doctor even ran an ANCA that was negative.  When they checked my bladder they noticed enlarged vessels but was otherwise normal. My nephrologist ran tests which were good and said the only test left was a kidney biopsy to r/o an autoimmune problem.  Recently my heart and legs started to hurt more at night, my feet were stiff and painful in the morning, I developed an unusual sore in my nose and it was harder to make it through the entire work week.  Last Thursday night I felt more extreme fatigue.  By Friday I was worsening and knew I needed urgent medical attention.  I had tried to get into the doctor but was not able to.  I was suddenly so heat sensitive, feverish, fatigued, short of breath with any activity and had constant burning pain in my vessels, especially my heart.  My friend drove me 4 hours to OHSU in Portland, OR.  My family knew I was ill and took me to the ER.  They did a work up and eventually sent me home.  My BP is usually 110/70 and HR 65-70 on average.  In the hospital the highest BP was 175/99 and HR jumping up to 111-115 bpm for many minutes. This was a big change from my normal.  My EKG was abnormal.  I felt too hot and also had the chills.  I felt weak when I tried to move.  I had bad, burning pain in vessels. My eyes were bloodshot. so the ER doctors assumed I had been crying and that the vital findings were due to anxiety from being in the hospital.  I do not suffer from anxiety and have worked in hospitals for 20 years.  I am a very calm person by nature but they made their assumptions and did not provide me with the medical care I so desperately needed.  My condition continued to worsen so my family took me to another ER on Monday.  They did a CBC and thyroid and sent me on my way again.  Because of the two ER visits and assumption by the first doctors that I was anxious and had been crying, all the doctors including my primary felt I was well physically but did not think it was safe for me to stay in Portland.  I am so ill even though the normal tests that are run do not show it. I was able to get worked in with a Rheumatologist on Wednesday - Bless her!  She did not see any signs that concerned her clinically but agreed to do blood tests.  She offered me Gabapentin for the "neuropathic pain".  I told her that I did not believe I had neuropathic pain, it felt more vasculogenic in nature and that I felt I would benefit from Prednisone.  She put me on 10 mg for 15 days.  Probably far less than I need but hopefully it will help buy me some time.  My abdomen hurts and I have lost my appetite.  I have lost weight since last week even though I force myself to eat. My head, heart, abdomen, kidneys, arms and legs hurt.  My mouth and nose have sores and my daughter has noticed I feel hotter and do not smell the same.  I have seen patients with vasculitis and recognize the symptoms.  It can be a tricky problem to diagnose and doctors are used to picking up the symptoms after it has caused major damage.  Looking at clinical signs is largely ignored in the earlier phases when it is treatable.  I feel I am rapidly dying on the inside and need medical help to stop the damage so I do not end disabled with a chronic medical condition.  However, our current system does not serve people in my condition well.  I have a 10 year old daughter and am a single mother who needs to work and wants to work.  I am not looking for pain medication but just proper medical attention so that I can hopefully survive this.  Please help!


This discussion is related to muscle/joint/fatigue/numbness?.

[Dr. Kokil Mathur]

Hi
Welcome to the MedHelp forum!
Your ANCA is negative. For vasculitis as a diagnosis this should be high along with high ESP, high C reactive protein and high WBC, anemia and high eosinophil count. Angiograms of major blood vessels to show the characteristic inflammation pattern is needed.
Please consult your PCP for primary examination followed by proper referral to a vascular specialist.
Other than that I hope your thyroid, liver, adrenal, pituitary and other endocrine gland function is normal.
Hope this helps. Please let me know if there is any thing else and do keep me posted. Take care!

[Roxanne21]

I have been diagnosed with Vasculitis but have no knowledge.  When you say you have seen people with vasculitis, can you describe how you can tell when someone has vasculitis by looking at them.  Also, isn't there many different types of vasculitis?

[Londres70]

Kidney biopsy results?

Labs results that the Rheumatologist ordered?

I wasn't thinking Vasculitis when I read your post; I was thinking possibly SLE.  

[helen41]

Oh my goodness. That sounds so frightening.
Your letter is very calm, organized and articulate- any chance your primary would read it and maybe take another look at your situation?
If that is a course you decide to take, I do have a suggestion. It was a bit difficult to read as one long paragraph. You might get better results if you break it up into chunks for the reader.
All I can do is send warm wishes. I wish it was more.