My name is Dorothy. I am 47 years old. I live 2 hours east of Toronto, Canada.
The earliest to my knowledge that I showed symptoms was in 1993. I had no energy and my G.P. at the time prescribed antibiotics to treat various infections etc.
A new female doctor came in to practice there and I decided to switch over to seeing her. Dr. Collins suggested that I have a physical and routine blood work. The blood work came back with low Iron and low WBC & Neutrophils. She suggested I take Iron and repeated the blood work a few times within the next month. She also did other blood work canceling out many disorders that it may have been. All the blood work came back normal with the exception of WBC & Neutrophil counts. She referred me to a Hematologist. She said that they would probably need to do a bone marrow biopsy. She said to be prepared that they were not pleasant.
The Hematologist told me that he thought there was a possibility that I may have Leukemia. He did say that I would have to have a Bone Marrow Biospsy. I was scared at that point…. But I just resigned myself that I wasn’t going to worry about it until I knew for sure. At the time I was going through a divorce and was taking care of my two children on my own. Working really hard at the time, I had a daughter who had diabetes and was dealing with that on top of court battles with my ex and school for kids, cooking, cleaning, moving, etc. etc. This was a stressful time in my life.
Well the day came and I headed off to the hospital for the bone marrow test. I was directed to the Chemo department. When I realized it was the Chemo ward ………it all hit me like a ton of bricks. I could have leukemia! Things started racing through my head…..What is going to happen to my kids etc. I started to cry. I was suddenly terrified. I now had time to think of me….. oh no.
I got through the test. Dr. Collins telling me that it wouldn’t be pleasant was definitely and understatement ….. it hurt like hell! I went home and slept the rest of the afternoon. Probably just from the crying.
A few weeks later I went back for the results. I was told that I didn’t have leukemia and I was sent home. I was so relieved that I continued ignoring all the illnesses and infections.
I ignored the horrible fatigue even after falling asleep driving and being in a collision. My daughter and myself could have been killed along with others.
As well, I needed surgery on varicose veins due to clots in my legs. I had the surgery and ended up with my whole leg becoming infected. The next year, the other leg had to be done. Guess what, it got infected as well. I had to be put on the intravenous antibiotics for the second time.
Later, I was treated for 6 months with antibiotics for a skin abscess on the calf of my leg. My GP couldn’t seem to get rid of it. I decided there was something more to this and called up the vascular surgeon. He gave me more antibiotics and I had to go in weekly to have the hole cleaned out and skin removed. It was so deep that the doctor said you could see my leg bone.
I moved in 2001 and ended up with a new younger doctor. I was still getting the usual illnesses, chest infections and asthma attacks. He ran some blood work and noticed my Neutrophil count was at 500 (.5). He followed it up with more blood work ……….. my neutrophil was then at 400 (.4). He then got me into another Hematologist. This one was Dr. Davidson. He did all the usual blood work as well. He then followed it up with blood work every couple of days for a month (checking for a cyclical pattern). I continually suffered chest infections and mouth sores and I was averaging one visit a month to the hospital for asthma attacks at this time.
There was nothing normal in my blood work. I was sent into the chemo ward for an iron infusion. I was better able to deal with going to the chemo ward this time. A few weeks later after the iron infusion my blood work looked good with the exception of you guessed it ….the WBC and Neutrophils. The neutrophils stayed around the 200 (.2) to 400 (.4) mark .
Another bone marrow biopsy was done and this is when I was diagnosed with Severe Chronic Neutropenia – Idiopathic. Finally, I knew what it was. Or did I? I thought I was confused before. I am diagnosed with something that no one has ever heard of, a truly orphan disease.
This is when I started doing my own research. I found and contacted the SCN Registry. Now I was starting to get information on this rare disease. What a resource to have available for information on this rare condition.
After diagnoses I started requesting copies of my blood work (I could only get as early as 1993) I was shocked to find that even as early as 1993 ….. I was showing Neutrophil counts of 38 and 500 (.5) and nothing was being done about it or was I even being made aware of it. It seems no one knew what to do with this information. They just seemed to scratch their heads and dismissed it.
Dr. Davidson then referred me to Dr. Wells and the Sunnybrook Cancer Centre. He is a Hematologist / Oncologist. Dr. Wells specialized in MDS and is in research also.
Doctor Wells was sure that all the fatigue and weakness I was feeling was due to a thyroid issue. I had other doctors think the same thing in the past. He did all the usual blood work canceling out thyroid issues. He threw his hands up and said “I don’t know”. I was continuously sick and had mouth sores. My Neutrophil count was at 200 (.2) He put me on Neupogen .33 every other day. This resolved the infections. But, boy the bone pain was horrible. Head aches that felt like continuous migrains. Pain in my arms and legs …. But, I wasn’t as tired. At least that is something.
Dr. Wells has been following me now for several years. I was made aware of things that were said over these past years that he thought I had the beginning stages MDS.
Well, Last summer I had the opportunity to go to Ann Arbor Michigan for the SCN Registry Family Conference. Wow, I was amazed at the amount of information that I had come home with. I even had a 15 minute private consultation with Dr. David Dale. You can’t put a price on that. He said that Idiopathic Neutropenia usually had Auto immune undertones. This would explain Osteoarthritis I have in Seven Locations. A couple more locations may be there now. I haven’t told them about those locations yet. Sometimes I feel that to tell them doesn’t make a difference. Why bother?
Well after coming back from the conference I put a call in to Dr. Wells. I told him that the Registry recommended daily injections at lower doses and told him what I had learned. He then started me on daily injections. It really helped with the bone pain.
He also told me that the only way to be really be sure that I do not have MDS is to do another bone marrow test ….. this time Cytogenetic testing. This was done by Dr. Wells.
Three weeks later I was at the cancer centre preparing for my 3rd Bone Marrow Biopsy.
The results of which were …. I did NOT have MDS. or AML. He was surprised that it is Severe Chronic Neutropenia as a Primary. I am his only patient with it. I guess we are all learning including the doctors.
He wouldn’t commit to the fact that I won’t need anymore Bone Marrow Tests. He said “never say never”. I told him that I want to be put asleep if I ever need it again.
Since being on the Neupogen I have felt “healthy” I am not sick very often. I seem to be maintaining an ANC of approx. 1,500 (1.5) or slightly higher. I do get the side effects of bone pain, stomach issues, weakness, some hair loss (thinning). But, my quality of life has increased. But, I will never be the way I was.
I am not without fear of the long term effects of Neupogen, and they are still learning about, this little known and under-funded and under researched condition.
