Sunday, January 15, 2017

I've been much livelier because the eye migraine is under control

I have been much livelier for the past 3 days, going out each day but unfortunately mostly for medical purposes.  I have had a sinus CT scan, a plain xray, thyroid ultrasound, and a blood test for my ACE levels but I have no results yet.  It is now the weekend.  I went to 2 different doctors so it is going to end up a mess when my doctor on record finds out and gets her nose out of joint but at this point I don't care.  It was actually Dr Craig who OK'd me having the ACE level check.  Dr Raylea did not want to at this stage.  And everyone who reads this should ask for a thyroid guard when they have just about any imaging done including dental x-rays because you won't get one unless you ask for one.



Right now I suspect I have sarcoidosis after reading about it and the eye problems,  my unknown lung nodule and sigmoid colon granuloma fit right in with it.  I also had a biopsy of something that looks like a keratosis but it has grown since the skin check before Christmas even though I passed the skin check.  It has been both itchy and sore at the same time.  Like my eyes but my eyes have been bad for a long time that is why I had my last eye appointment for glasses earlier than when I was actually due.  And that was around my birthday and my eyes had been sore, blurry and photophobic for some time before that. On and off at first but now it is constantly there even though I have started taking the rhinocort that the optician O'Neil suggested, every time it got very, very bad and then bingo, it works towards a significant reduction of pain. I may have even blogged about it back when I first tried it.  I ran out of rhinocort around Christmas and I was not doing very well then.  I missed out on Christmas.  My eye was so sore that it felt like a migraine on one side of my head plus I had trigeminal neuralgia and still have.  If I stop taking the Rhinocort, I know it will be like hell again. A very strange way to treat a migraine. Other pain in the area could possibly be caused by my right jaw joint that went clunk one day and has been sore ever since....but I have had TMJ problems before so it is not new, except the clunking itself out of place was very obvious this time.  But you know me I can put something out by just bending over or looking upward or leaning to the position that I was forced to adopt when tutoring behind students at their computer workstations.  My elbows are still out of place or something too so much so that I cannot pull on the other end of a toy or rag with Milo because she shakes my her head back and forth sideways trying to yank it from me and she is strong for a little dog, so much so that my "tennis elbows" come right back and they are not insignificant pains either.  All that stuff reminds me of EDS rather than sarcoidosis so I will get back on track.

I did tell Dr Jo that what the optician recommended had worked.  She seemed to be pleased for me and she certainly did not tell me to stop using it which I had expected  just that because Rhinocort is a steroid.  The well-respected optician David O'Neil had suggested that the kind of pain I had and duration of it sounded more like a chronic sinus infection (and I thought to myself, "Like Lyme Disease.") and that it would not go away on it's own.  Like I said it reduced the pain within days but there is always a residual pain deep in my skull at about temple level and the photophobia is not eliminated by Rhinocort either but it helps a lot. I'm spraying once a day. I haven't found anything to deal with the blurs and swimmy patterns and floaters that are starting to make me feel like I have a flash of seeing something that is not there which is a bit disconcerting.  I have been sitting in too dim a light or else my eyes are going dim.  I can hardly see the keyboard after looking at the screen but I cannot put my main interest in life aside so I plod along at the computer anyway.  I don't want to go blind because life without being able to read on-screen or off would be intolerable to me. My mother at 87 is also worried about her eye sight but because of cataracts and glaucoma.  Glaucoma is common in Sarcoidosis too and it seems this Sarcoidosis can come in many different levels of severity. My sisters sarcoid lump went away.  Others have long-term chronic sarcoidosis and when you think about it, although Dad was diagnosed with non-Hodgkins lymphoma I would question that too.  The most common cause of death in sarcoidosis is cardiopulmonary. Sarcoids themselves are not malignant although they can lead to non-Hodgkins Lymphoma I read .
I'm the only one who used it this Christmas Just passed.

I have symbicort for my COPD that I was recently diagnosed with but those symptoms are the same as lung sarcoidosis so I don't know that it should be called COPD yet.  And Lyme disease has all the symptoms I have mentioned so far as well.  Lyme is well-known among the patient community as causing sarcoidosis too. Anyway it is too early to jump to conclusions but even the swollen belly symptom of gastrointestinal sarcoids is very familiar to me as you know.
15 years old, before glandular fever too
And I thought that was huge! 2001?

It is probably better that I leave you with something to read rather than me rave on about something I may not have, but it sure sounds like it with a deepening voice being added to the symptom list as I continue to research.  If I had my life over again, I would study to become a doctor even if I did not practice just so that I could have the perks like access to online databases.  Abstracts from research papers are often enough to learn a great deal in any case.  I was a research assistant and I was studying my Masters Degree so let's just say I already know how to report in an unbiased way but I am NOT attempting that in this blog because I have found that personal experience of your own body is a pretty good determiner of gut instinct too.  This is the first time I have felt that everything would fall into place with this diagnosis.  It is just a gut feeling more so than worrying about something that might not happen.  I'm not scared........yet.

But first before I get into the more official publications, one final co-incidence after finding out I had gg grandmother who was Creole.  The bit about sarcoidosis occurring more frequently and being more severe in African-Jamaicans (other African populations and the Finnish populations too but not Asians or Australian Aborigines. To me that means that everyone in my family needs to get their ACE levels checked to rule out sarcoidosis because it seems like it can cause just about any symptom depending upon where the sarcoids are and how many there are.  I wonder how Brett's pulmonary Langerhan's Cell Histiocytosis fits in.  He has not had any problems for ages though but do you remember that unexplained rash he had?

I had a punch biopsy yesterday as well and this was what a bit of, was sent to the lab.  I just happened to have the pleasure of allowing a medical student to perform it. It was his first and he did well. Not that I have ever had one before.  I asked Craig to do the injection though because that is the worst part.
I keep adding to this entry because I keep forgetting things.

This photo was, taken on a day I was puffy with fluid or something, shows another mark that I asked about but Dr Craig was not worried about it. I've got a few bruises at the moment too but so has Flora which I know worries her just like they did Ninnie.
This is what it looks like today.  I can finally have a shower and wash off what is stuck there today about lunch time.


The following is copied from Health Direct and is only a simplified description of sarcoidosis.

What is sarcoidosis?
Sarcoidosis is a disease in which inflamed immune cells cluster together to form tiny lumps, in different parts of your body. These are known as sarcoid granulomas. They usually occur in the lungs and nearby lymph nodes. They are not cancerous.

The exact cause of sarcoidosis is unknown. Some doctors think it may be triggered by exposure to bacteria, dust, viruses or toxic material. [like mold and chemicals]

Sarcoidosis symptoms
Some people with sarcoidosis have symptoms, and others have very mild ones.

If you do have symptoms, you might:

  • feel tired
  • have a temperature
  • have swollen lymph nodes
  • lose weight.

If many granulomas form in an organ, they can affect how that organ works. Sarcoidosis can cause problems with the:

lungs – cough, chest pain or feeling short of breath
skin – tender reddish bumps, rash or sores
eyes – blurred vision, pain, severe redness or sensitivity to light
heart – abnormal heartbeat
brain – headaches or facial paralysis
kidney – increased thirst or formation of kidney stones
joints – swelling and pain (arthritis).

Sarcoidosis diagnosis
Sarcoidosis is difficult to diagnose and might be picked up only if you’re having medical tests for another reason (for example, a chest X-ray for a suspected lung infection).

You might be asked to have a biopsy, in which a piece of tissue is removed by a needle and syringe. Your doctor might also ask you to have other medical tests such as an eye examination, an electrocardiogram (ECG), tests of your lung function or CT scans.


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