25th January 2012. Finally had my consult with the rheumatologist at my local hospital. She had only seen 3 cases of EM before.
My feet were behaving themselves but I had taken some photographs with me showing them in flare mode plus a potted history of my experience with what I thought until then was EM. One of the photos and the resume were kept to go in my hospital notes.
She reviewed my medical history and current medications and gave me a top to toe examination. I have good pulses in my feet so my circulation is ok on that score. She also had a good look at my hands which to date don't have symptoms. Her conclusions were that I am indeed suffering from primary EM. However, I had to get some blood tests done and a couple of them had a '? secondary' next to them so it could be primary or secondary EM depending on the blood results.
Her advice was to continue with the Amitriptyline as it seems to be helping in keeping the worst of the symptoms at bay. I can up the dose gradually if required to a maximum of 150 mg daily. Hope I don't need to get that far.
If it stops helping she then recommends I try Duloxetine (Cymbalta). If that is no good then I will be referred to Professor Chris Denton at the Royal Free Hospital in London who she says is the main man for EM.
She also asked if I would be willing to be a teaching study for students and/or medical staff which I thought was a great idea as the more the doctors know about EM the better for all of us.
A complete surprise was that my lifelong smoking habit was not even mentioned until I brought the subject up towards the end of the consult and she just said that smoking is never a good thing to do. I had fully expected at the outset to be told that the EM was all my own fault, but nothing, not a peep, nada, even though she had gone through my medical history with a fine tooth comb.
At present I am having, on average, one flare in any 24 hour period, usually late evening/night when I need to use a fan. If it stays like that I will count myself extremely lucky but in reality I know that it is likely to get worse again. I am not looking forward to summer and the possibility of warmer weather. I have been fortunate in visiting Florida for a holiday on a number of occasions and would love to go again. Now the flight alone woulde be a complete no no let alone the lovely Florida sunshine.
Thank goodness I found this site and the wealth of information to be found here, and thanks to all of you who have shared your knowledge.
Thank you so much for sharing your experience at the Rheumatologist office. It is also wonderful to hear that you are only having one flare a day. I hope the medicine continues to help and that your EM doesn't progress!
Good news! I will be having a nerve condution study done tomorrow to determine the extent of my neuropathy and then I will be meeting with the neurologist to discuss EM as a possible diagnosis. According to the blogs I have read, I think it is an emphatic yes. I will let you know how that goes. Thanks for the updates.
Very good news on all accounts. A comment on the possibility of going to Cymbalta. I am NOT allergic nor do I have reactions to any medication. However when I tried Cymbalta it was the worst reaction of my life. It felt like I was sticking my toe in a light socket. And doing it every 3-4 seconds. No way I could sleep. I immediately stopped in (without asking my doctor) and the shocking experiment got better. I take Lyrica. It is a cousin to Cymbalta.
I am on a new possibility. There is a very small study out there. 7 people took Prednasone in the early stages of EM. I am NOT in the early study but giving it a try anyway. The dosage is 80 mg per day. 7 weeks of full dosage and then go on the taper. The study I referred too....6 of the 7 people were free of EM after one year. Not sure what happened after one year. Prednasone is a Bad steroid. It has bad side effects. But the possibility is so great that I wanted to try it. This is day #2 for me. I am not as bad as normal. Normal....Flare all day (and night) every day all day long. BUT is this because this is a good day or will the good continue? Dear Lord.................
Tilly P, You sent me a comment but I can not see it on this web site. It has to be here but just can't find it. You asked some specific questions and I will try to answer. I wanted to place this were you asked the questions so anyone following could also follow. You might want to "copy" and "paste" this to the other spot. I do get lost on this web site.
The prednisone continues. This is day 11 of the prednisone. There has been improvement. However, it has not been a straight line progression from bad to good. It has ups and downs. Just like when it was going the other direction. After day 1 expected to be all better by day 3. That was not to be. However it does show betterment from the beginning until now. It is NOT 24/7 any more.
Other people in the study showed some improvement between week one and two. I too have shown improvement during this time period.
Other people in this study had just been diagnosed with EM and had just became aware of their condition within 7 months of taking the prednisone. I have had EM for 2 years and was afraid that I had lost my window of opportunity for the medicine to work for me. That may not be the case.
I saw you asked the smoking question. I have never smoked. Never, ever. And here I am with EM. In fact I asked the question on another site about maybe I should start? As I know smoking does things with the blood and blood pressure. I don't know.
No side effects from the prednisone. I know there are long term effects (adrenal glands, liver etc). Had a nurse friend tell me that I will die from something long before the liver has a problem
I sure know about your lack of sleep. I went for several months with 0-2 sleep per night. I don't want to do that again.
Don't stand in that snow barefoot. All you need is to get frostbite. In fact my wound doctor is a frostbite specialist. AND he is very good.
I have been outside at 40 below zero (-40 C = -40F). I don't have socks nor shoes on but I move pretty fast in a wheelchair.
The quilt. That was a going away present when I retired. I worked in construction engineering so there's lots of equipment on one side of the quilt and have been into flying and so that side of the quilt has many types of planes. Sooooo believe the women all liked me...... or.....they wanted to get rid of me. LOL
I sure know what you mean about reading that doctor jargon on EM and not knowing what is being said.
You were blessed to find a doctor who actually knew a little something about EM. My Rheumatologist never heard of it so I went to see a Neurologist because I had seen a video of a mother/daughter in the UK who had finally been diagnosed by a neurologist. The one I saw had only read one medical paper on it & never seen it in a patient.
Unbelievably my sleep specialist had seen EM 32 years ago at a very small hospital that specialized in rare diseases. He was quite shocked that after all these years most doctors still have never heard of this disease.