Dear Doctor,

Re: my diagnosis

I am writing to let you know I have finally been diagnosed and I was hoping you could give me back a few years.

I have had symptoms for over 10 years and I have finally been diagnosed with polymyositis. This is an inflammatory myopathy that causes muscle weakness and muscle pain in the muscles closest to the body. It is an auto immune condition.

I was diagnosed from a muscle biopsy. I have been to so many specialists and I hope that maybe you would remember me so that if someone else comes into your office saying they have muscle pain in their arms and legs, and a feeling that their muscles won't relax and difficulty with fine motor skills and an elevated CPK, that you take the time to listen and try and work with that patient to find out what it is. For 8 years no one offered me a muscle biopsy.

Merry Christmas,
yours sincerely,
G. N.

P.S. I am not my disease (but knowing what it is has helped me greatly)


TO: the endocrinologist, the pain specialist (who said it was fibromyalgia), the psychologist (that said I had cognitive defects and referred me to the immunologist), the neurologist (who gave up after finding out it was not MS) and the rheumatologist (who diagnosed and treated me for 2 years as having Sjogren's syndrome).

PHOTO BY bwavobunny

A merry go round that is not fun

Many diseases may be clear cut but if it is one thing I have learnt in the last 10 years it is that diagnosing an autoimmune disease is not. I have been to so many doctors and specialists who just pass me on to the next specialist - the medical merry go round - and I have almost given up many times. I have been given a few diagnosese over the years but when treatments do not work - after a year or so - they decide it may not be what they first thought. I have also been told it might be MS or Lupus or Fibromyalgia or Chronic Fatigue or Ankylosing Spondylitis (this is a real disease, I did not just make that up). I have been shocked that many well respected specialists are happy to give suggestions of what it might be. A lesser person might have become very scared but I am not my disease. This mantra has helped me as no one else has.

So, what is the upshot of all this? If you are not well and you do not have a good G.P. on your side, you must be your own advocate. This is very hard if like me you are being told that it is definately autoimmune in nature. Why? Because there are so many autoimmune conditions and it is very hard to narrow it down, especially if the doctors cannot. One place to start is autolist, where they list disorders in sections such as Neuromuscular (affects nerves and muscles) or Vasculitic to (do with blood vessels and veins) etc. They also have an alphabetical list of over 80 immune disorders and their symptoms and recommended links.

Also consider that only you know your symptoms and how you feel and maybe you are not explaining them in the way that the specialist expects to hear them. Take pain for example how many kinds of pain are there and how do you explain them? Many diseases have specific measurable signs that show up on EMG's or blood tests but many do not. People with these symptoms are often left undiagnosed - put in the too hard basket.

Be strong. Do not be afraid. You are a detective on an interesting and difficult case and above all remember You Are Not Your Disease.

Thanks mel2u for drawing

Current symptoms

Just a little review of my current unexplained symptoms for my own personal records. This seems timely as it is the first day of the 11th year with some of these concerns. The last symptom on this list is the very first one I had. I realise that most of these are subjective which makes diagnosis difficult, especially when doctors want to see results.

Tingling

• lips - left side


• chin


• toes of left foot


• arms - both - vague

Aching

• shoulders


• hips


• ankles


• wrists


• jaw

Pain behind right eye with pupil staying larger than left eye

Tinnitus - ringing in ears

Pain on use eg computer hurts arm, chopping veges hurts arm

Headache in temples

Slight sensitivity to light

Stiffness from sitting

Feeling of heaviness in limbs

Weakness in muscles of upper arms and thigh

Feeling that muscles will not relax

open your eyes

Every night when I walk up the stairs in the dark it is as if someone has but a blind fold over 1 of my eyes - just 1.

I don't quite understand this phenomenon even though an opthalmologist has given me a name for it - Adie Tonic Pupil.

Sometimes in a semi dark room you can see that 1 pupil is large and 1 pupil is small. Always the right 1 is large and I'm not sure if that is the eye with the Adie or the left 1.

What I do know is that when I got that bad migraine last week it was a pain behind my right eye and my right pupil was enlarged.

I also know that it is an autonomic nervous system sign. The ANS is like a control system and is involved with heart rate, digestion, respiration rate, salivation, perspiration, pupil, urination, and sexual arousal.

Links:

Holmes-Adie syndrome at Washington University Neuromuscular

HealthLine

CYBER-SIGHT

Adie's as a manifestation of Sjogren's Syndrome

Listen up.

There are a thousand chirping birds in my head most nights - in the day they reduce to a high pitched group of crickets singing in unison. I am a nature lover but this is ridiculous.

Some people might think it would be lovely to listen to these constant companions but I wish they would get out of my head and leave me in peace and quiet. They are sometimes so loud it is difficult to hear other things like what the children are trying to say to me.

I think people who have tinnitus may become lip readers without really knowing it. I noticed this when a new doctor was speaking and I had to work really hard to listen as I could not read her lips - she had a strong accent which makes lip reading difficult to the novice. I have only had tinnitus constantly for 6 years now. It is just added to my list of symptoms and no doctor (in the many that I see) has ever investigated it further.

To tell the truth it is only really annoying on those nights when I cannot get to sleep easily and I lie there listening to the sound of a thousand chirping birds...

(BREAKING NEWS: Henry Ford Hospital offers hope to the more than 50 million patients with tinnitus. )

Oh Night Divine

Can you remember the feeling of waking in the morning after a good night's sleep and feeling so good - you feel rested and have not a pain in your body. Well that is a very rare feeling for me and hundred's of others who suffer from chronic undiagnosed pain.
Better sleep is not about getting a better mattress, no matter what the salesman or The Better Sleep Council brochure will tell you. It also says on the brochure that a good night's sleep is essential for your mental health, your emotional health and your physical health and "If you think you are suffering from a serious sleep problem, such as insomnia, sleep apnea, narcolepsy or restless leg syndrome, consult your doctor or a sleep specialist" It does not tell you that your doctor may just add these symptoms/conditions to your already large list of symptoms and do nothing about it. If you think I'm angry, I am. I just want a good night's sleep...well that's a start anyway.
Apparently what I have is not life threatening - according to my doctors - I have no liver problem, no heart problem, no kidney damage (all the pain killers may have something to say about that soon!) so just give me something to manage the pain.
But I digress - the pain specialist - who is treating me as if I have fibromyalgia, as no other diagnosis has been offered, says all my symptoms may just be due to sleep deprivation. So did any one order a sleep study??? No one ever checked for tender points either!
See previous post 'Go To Sleep' Tuesday, May 1, 2007
I am not my disease - I have a life. (but it is getting smaller) Oh Sleep Divine.