February 22, 2013

From Then ‘Til Now

Posted in Journey tagged , , , , , , , , , , at 8:27 pm by Reva

With my current lingering crash I’m considering returning to the specialist I saw about 5 years ago. This specialist played a big part in my acceptance and understanding of ME/CFS, and while life has intervened since, I think he may hold the key to some symptom relief. You can find the prequels to this post here, here, here and here and here and here and finally here (hmmm, maybe time to update and make this a little more user friendly…) .

A while after visiting the naturopath I found out a GP in Victoria who specialised in ME/CFS. I was pretty excited, especially when I found that I didn’t need a referral. I was a bit concerned about the cost of the appointments but the cost of interstate travel to get there, not to mention the toll a visit to this doctor was going to take on my health.

I was pleased when I found out the initial appointment could be done remotely, using surveys I completed and sent back and a phone call with the doctor’s practice nurse to collect some more data. There was also a request for blood tests which were sent back to the doctor.
I learnt a bit from the phone assessment. One of the things that really stuck with me is that the only activity that isn’t considered to use energy when measuring activity levels is watching television (and sleeping or lying down). I watch a lot of television. As a general rule, if I’m not working, sleeping or doing the essential household chores, I’m watching television.
The second visit was a face to face visit with the doctor. He was a kindly man who explained things really clearly, with lots of diagrams. He wrote so much down for me to take home, obviously used to working with people who had poor memories. He did some more tests, and prescribed a few follow on lab tests based on some of his findings.

Pin Cushion

Just another trip to the pathologist

One of the tests he did that day was a standing test. I started in a reclining position, and blood pressure and pulse rates were checked. I then had to stand with these tests being repeated every two minutes for up to 20 minutes. While standing I wasn’t allowed to move – not even wriggle my fingers or toes. The results were put into a computer program and changes in my pulse pressure and heart rate were calculated and graphed. Apparently this test is done to rule out POTS. During the test there was a 29% increase in my heart rate and a 29% decrease in pulse pressure. I was told that a 30% change in pulse pressure warranted further investigation for POTS. He decided to treat this as reduced blood volume and prescribed an electrolyte solution to drink a litre of each day, along with a medication to stabilise my heart rate.
He suspected I also had symptoms resulting from reactive hypoglycaemia and increased urinary excretion of potassium, so he sent me off for some tests to follow this up.
And finally at the end of the visit, using information from the questionnaires and the tests that had been completed he actually officially (well, to me it was official) diagnosed me with ME/CFS. We went through the Canadian Diagnostic Criteria together and the outcome was pretty clear. A few of the criteria I wondered about, like the immune manifestations. I never (touch wood) get sick. He pointed out that that I have chronic hay fever, asthma and allergic dermatitis. His examination also showed I had tender lymph nodes which fall under that category.
I decided to bring a good friend along to my second appointment as while the information the doctor gave me at my first appointment made sense at the time, I had trouble explaining it to others. At this second appointment he confirmed that I had reactive hypoglycaemia, high excretion of potassium (which apparently causes “sighing breaths”) and borderline ratio between Vitamins D2 and D3 (which is apparently related to some dysfunction in the immune system). He decided to treat the potassium issues. The vitamin D issue was so border-line and the treatment was intense and long, and it was questionable whether it was having any impact. I went home with 2 new medications – one to prevent the potassium leeching out of my body, and another to replace the potassium.

I did have a third appointment which was a phone consult. After this appointment I started a regime of vitamin B12 injections, starting with one a week, and working up to daily. They were subcutaneous (like insulin) and not intramuscular like vitamin B12 Injections usually are so I learnt how to do them myself.

I was starting to feel like this!

I was starting to feel like this!

I probably kept all of this up for another 6 months or so. The B12 injections were the first to go. I moved interstate in this time and it became inconvenient and expensive, and I didn’t feel that I’d made any progress. Slowly the other treatments stopped too. The potassium channel regulator went next. It was also expensive, and it didn’t think it made me feel any better either. In the end I stopped the electrolyte solution because of a number of reasons. Like all the other things, I didn’t think I felt any better for taking it. It had a slightly artificial taste to it. It had sugar in it – it seemed like a contradiction to take on an extra 60g of sugar and 400kcal a day when I was already struggling with my weight and had a number of risk factors for Type 2 Diabetes, when the solution didn’t make me feel any better.

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Skip forward about 3 years to now – I’ve been taking that electrolyte solution (half the prescribed amount) for the past month or so. I’m still not sure it makes me feel any better but it feels like I’m doing something. I feel like I’m starting all over again from scratch. Well, maybe not scratch but close to it. My next step is to discuss “where to from here” with my GP. Unfortunately I can’t get in to see her for another two weeks, but I guess that gives me another two weeks to write a list (because there is no way my brain is going to let me remember on my own).

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