I have just read the Question what kind of Vasculitis have I? It sounded a lot like my own experience but I would not like to say it is the same diagnosis as each individual is different. Anyway I was inspired to tell my story in case it may help someone a little as I have been very lucky as I realise reading other cases.
In March 2009 I had a virus with which I had a chest infection and lost my voice for about 6 weeks. I went to ENT for tests and then was referred to chest consultant who diagnosed Pulmonary Fibrosis and Lymphadenopathy.
I seemed to recover with antibiotics although I did lose my appetite (no bad thing I thought as I was on a diet anyway) but it turned out to be muscle loss in my legs and left arm.
Then in November 2009 I developed numbness in my right foot and a patch of redness on the right ankle. I went to Physio as the doctor thought it might be a sprain. Over two months it became worse and felt really hot and painful, keeping me awake at night.
It then spread to my left foot which became numb and painful. I was getting more and more tired which I put down to not sleeping at night. I had patches of redness on my legs.
My GP ordered blood tests which showed high inflammation markers.
In March 2010 I lost feeling in my left arm but my shoulder was incredibly painful, at which point we panicked and rang the emergency doctor (why does everything happen at night?)
This turned out to be a good thing as I the paramedics said although my heart was OK it might be best to go to hospital as if I kept going back to the GP they would only test one thing at a time and in hospital they would test everything.
I was admitted to the kidney ward as I had blood in the urine and everything is bit of a blur from then on as I had many tests and after three days was moved to the Rheumatology ward and told I had Microscopic Polyangitis and this was a rare and serious condition. I was given a leaflet to read but could not take it in. I stayed in for 10 days and was given Prednisolone and various other things. The funny thing was as the medication started to work I kept getting involuntary twitches in my muscles.
I was then discharged and booked in for a kidney biopsy which confirmed the vasculitis. I had nerve conduction test which revealed a lot of nerve damage to my left hand and feet.
I then had 10 pulses of cyclophosphomide which I had every two weeks as a day case. It was originally to be 8 but I suffered from a bout of diarrhoea 2 hours after every meal but after the 2 extra doses of cyclo it stopped. Lasting until August 2010
I then went on to Prednisolone and Azathioprine. Gradually reducing the Predisnolone and increasing the Azathioprine until finally in March 2011 I finished the Predisnolone. Since then I have had trouble with certain counts in my bloods being above or below range (not sure what they mean) but I have been to see a haematologist and she said it was due to the medication. My consultants disagree about the amount of Azathioprine I should be taking and at my next appointment the rheumatologist will discuss it with me. I am also having a second Dexa test before I see her.
Apart from this I have been steadily improving, not falling asleep in the day time and having much more refreshing sleeps at night although I still wake up about 3 times but am able to go straight back to sleep whereas I used to have tea, a rich tea biscuit and paracetamols before I could settle. Although I still have a sort of numb ,pins and needles feeling in my feet and they go into cramp when cold, I have regained the use of my left hand with a bit of pins and needles still left. (I had completely lost the use of my two forefingers and thumb when the vasculitis was at its worst).
On looking back I see I have improved a lot although it doesn’t seem so at the time. I am in a much better place now mentally and physically and ready to find out more about the illness.
I only found this site a few weeks ago but it has helped already knowing other people have the same silly niggling symptoms that the doctors are not interested in such as the lumps on elbows and the lack of concentration, being unable to read or watch TV. I do see an acupuncturist and this has helped. It is traditional acupuncture which treats the whole and has kept me sane! I did see him before the diagnosis and checked with the rheumatologist, she said it would not cure the Vasculitis but if it made me feel better she was happy for me to continue.
Thanks and good luck to you all.