Shooppoop
08-31-2011, 07:11 PM
I'll start from the beginning. I am a 27 year old Science Teacher living and working in Reading, UK. For a long time I have been suffering with fatigue and in the past year or so I have been getting "colds" every term when I get run down, as well as having the constant smell of blood. I have put colds in inverted commas as these have not been contagious and any mucus has always been clear. Also I have had symptoms similar to IBS and a really swollen abdomen, getting rather fed up of being asked if I’m pregnant. So in Feb this year after much persuasion from family and friends I decided to go to my GP and get this checked out in case I had a thyroid problem or something.
After blood test 1 my GP said my white blood cell count was a bit high and we put this down to me always getting “colds”, but no sign of any other issues.
About a week after this I had two hyperventilation attacks after going up one flight of stairs, so I went back to the GP. Oxygen count fine, in fact 99% sat. and I was sent for a second blood test.
Now I always bruise, a family thing, but my arm was really hurting after this one. After a day or so the pain spread all the way down my arm, and eventually all through my right-side. I was limping and unable to use my arm properly, and at one point burst into tears because someone touched my arm. I was also exhausted, more than usual, and getting out of breath just walking up the stairs. I went back to the GP for the results of the blood test and again the white blood cell was high but no sign of any other issues. In face I was told your bloods show you are very healthy and he put the pain down to a stress reaction. After two weeks I was pain free and thought no more of it.
In mid May, in an after school meeting, my colleagues pointed out I was going red on the right-side of my face. There was a noticeable temperature difference between the two sides. The nest day I felt the pain reoccurring in my right arm, by the third morning I went to the GP, saw a different doc and he sent me straight to A&E thinking I may have had a mini stroke. I spent the whole day in the Clinical Decisions Unit where I had urine tests, reflexes tests and multiple blood tests. Here they found I had raised Anti-PR3 and CRP so I was sent for auto-immune bloods. When these came back negative (for the auto-immune diseases they tested for) they decided to refer me to the neurologist and also to send me for an MRI going down the mini stroke route.
Two weeks after my day in CDU I had my appointment with the neurologist, he did reflex tests and determined that I had not had a stroke or any other neurological condition but would look at the MRI just in case.
In the mean time I was in so much pain I was regularly being sent home from work. The pain was always on the right-side of my body causing me to limp, making it hard to use my arm and making me extremely tired. I went to my GP asking for pain meds in the hope I could start to function normally. He tried amitriptyline (10 mg) for two weeks, no pain relief, followed by gabapentin (900mg) for two weeks and again I felt no benefit. My GP was concerned that nothing was improving so decided since the neurologist had thought my pains weren’t neurological that he would write to the rheumatologist at the Royal Berkshire Hospital for advice. I soon received an appointment for late August to see the rheumatologist.
At this point I sat down with the deputy head and we decided that since I was clearly not coping that I would get myself signed off hopefully to return in September.
The pains continued and I had the MRI. It seemed an age before I got my second appointment with the neurologist, early August, and it was clear. No signs of MS or stroke. He thought I may have Fibromyalgia and recommended I see a rheumatologist, I told he that I had already been referred and he left it at that. Case closed for him.
So just over a week ago I saw the rheumatologist, first I saw junior doctor who was perplexed by my symptoms after I rolled of my medical history. She tested the tender spots for Fibro and decided to ask for a second opinion. I was then saw by the senior doctor who tested the movement in my joints and then asked me about the other tests I had had done. I told her about the CRP and my constantly smelling blood, stupid me forgot the Anti-PR3, and she said I think you may have a form of vasculitis but that I would need further tests to confirm this before I started treatment. So I have had more blood tests, given a urine sample and had a sinus/chest x-ray. She also referred me to the renal clinic for a sinus biopsy. My appointment for this is in November.
In all this time I have been in constant pain, varying from me just noticing my right-side more to being in so much pain I cannot sleep or walk depending on my activity level. My only relief has been sitting with a hot water bottle doing pretty much nothing but reading.
So this is where I am at, tomorrow I should be starting a new academic year, and I have no idea if I do or do not have vasulisits or when my treatment will start.
After blood test 1 my GP said my white blood cell count was a bit high and we put this down to me always getting “colds”, but no sign of any other issues.
About a week after this I had two hyperventilation attacks after going up one flight of stairs, so I went back to the GP. Oxygen count fine, in fact 99% sat. and I was sent for a second blood test.
Now I always bruise, a family thing, but my arm was really hurting after this one. After a day or so the pain spread all the way down my arm, and eventually all through my right-side. I was limping and unable to use my arm properly, and at one point burst into tears because someone touched my arm. I was also exhausted, more than usual, and getting out of breath just walking up the stairs. I went back to the GP for the results of the blood test and again the white blood cell was high but no sign of any other issues. In face I was told your bloods show you are very healthy and he put the pain down to a stress reaction. After two weeks I was pain free and thought no more of it.
In mid May, in an after school meeting, my colleagues pointed out I was going red on the right-side of my face. There was a noticeable temperature difference between the two sides. The nest day I felt the pain reoccurring in my right arm, by the third morning I went to the GP, saw a different doc and he sent me straight to A&E thinking I may have had a mini stroke. I spent the whole day in the Clinical Decisions Unit where I had urine tests, reflexes tests and multiple blood tests. Here they found I had raised Anti-PR3 and CRP so I was sent for auto-immune bloods. When these came back negative (for the auto-immune diseases they tested for) they decided to refer me to the neurologist and also to send me for an MRI going down the mini stroke route.
Two weeks after my day in CDU I had my appointment with the neurologist, he did reflex tests and determined that I had not had a stroke or any other neurological condition but would look at the MRI just in case.
In the mean time I was in so much pain I was regularly being sent home from work. The pain was always on the right-side of my body causing me to limp, making it hard to use my arm and making me extremely tired. I went to my GP asking for pain meds in the hope I could start to function normally. He tried amitriptyline (10 mg) for two weeks, no pain relief, followed by gabapentin (900mg) for two weeks and again I felt no benefit. My GP was concerned that nothing was improving so decided since the neurologist had thought my pains weren’t neurological that he would write to the rheumatologist at the Royal Berkshire Hospital for advice. I soon received an appointment for late August to see the rheumatologist.
At this point I sat down with the deputy head and we decided that since I was clearly not coping that I would get myself signed off hopefully to return in September.
The pains continued and I had the MRI. It seemed an age before I got my second appointment with the neurologist, early August, and it was clear. No signs of MS or stroke. He thought I may have Fibromyalgia and recommended I see a rheumatologist, I told he that I had already been referred and he left it at that. Case closed for him.
So just over a week ago I saw the rheumatologist, first I saw junior doctor who was perplexed by my symptoms after I rolled of my medical history. She tested the tender spots for Fibro and decided to ask for a second opinion. I was then saw by the senior doctor who tested the movement in my joints and then asked me about the other tests I had had done. I told her about the CRP and my constantly smelling blood, stupid me forgot the Anti-PR3, and she said I think you may have a form of vasculitis but that I would need further tests to confirm this before I started treatment. So I have had more blood tests, given a urine sample and had a sinus/chest x-ray. She also referred me to the renal clinic for a sinus biopsy. My appointment for this is in November.
In all this time I have been in constant pain, varying from me just noticing my right-side more to being in so much pain I cannot sleep or walk depending on my activity level. My only relief has been sitting with a hot water bottle doing pretty much nothing but reading.
So this is where I am at, tomorrow I should be starting a new academic year, and I have no idea if I do or do not have vasulisits or when my treatment will start.