Sunday, April 17, 2016

On (finally) getting a diagnonsis

As most of you know, I've been ill for some time now. Roughly two years in fact. For the first few months I thought I was just over-worked, burned out. But when my physical symptoms didn't improve, even after taking some months for self-care I realised something was actually wrong.

I was tired all the time. No, tired isn't the right word - I was bone weary exhausted. The slightest exertion would put me in bed for days. And no matter how much I slept, it was never enough. My body felt like it had been filled with concrete and I felt like I was moving through treacle rather than air. But possibly the worst for me was the constant brain fog. An inability to concentrate, to think clearly, to rationalise. Sometimes, even putting together a sentence was too much. Gary and Cas have become adept at interpreting my random mumblings and arm wavings.

After roughly 6 months of these symptoms I went to my doctor and discussed a few things. I had friends with ME/CFS and Fibromyalgia, so these were the first things I thought about. The doctor agreed that it could be ME/CFS, but we needed to rule out other things first. So, I had blood tests taken.

When the results came back, the GP asked if I'd had a cold or something when I went to have the blood taken. Nope. Well, my T-Cell Count was elevated, indicating my immune system was doing something. So, we repeated the tests. This time I had some inflammation markers and the GP wanted to rule out Rheumatological disease. So he sent a referral letter to the Rheum department at our local hospital. And I waited. And waited. And waited.

It took about 6 months. During which time my condition got worse. I couldn't walk any kind of distance (even walking around the supermarket to do the shopping was too much). We'd become trapped by my illness, because a day out was out of the question. Finally, after much discussion and hesitation we decided that we'd buy a wheelchair. We figured it would give us back some of our quality of life, we'd be able to have days out again.

I saw another GP around this time, He was quite young, and obviously VERY misinformed about ME/CFS. I had gone in because I was starting to experience a lot of pain, and I wanted to get some stronger painkillers. He was not nice. He treated me as though I was 'drug seeking'. And when I mentioned about the wheelchair he told me that I shouldn't get one because, "that's giving up". What I needed to do was "buy a cross-trainer and do some exercise everyday. Start with 10 minutes, and don't stop when you get tired. And build up. You just need to build up your stamina".

Needless to say, I came out of this appointment got into my car in the car-park and rang Gary sobbing hysterically.

This GPs advice stems from the Graded Exercise Therapy treatment for ME/CFS. But it is a complete bastardisation of this therapy - even the NICE guidelines state that this type of treatment should only be done under the supervision of a trained professional. And that's before you even begin to examine the literature around it's effectiveness - which seems to indicate that it makes many patients MUCH worse.

I didn't listen to this GP. In fact, once I'd calmed down, I was furious. I still am. I wonder what he'd say now, with my new diagnosis?

So, anyway. My rheumatology appointment finally came around in mid-December last year. The Rheumatologist I saw was really thorough and at the end of the appointment he told me that he suspected I have Lupus. The only time I'd heard about Lupus was through it being mentioned on House, so I had no idea what the diagnosis meant. However, it did seem to make sense, because instead of suffering from several different conditions (chronic migraine, skin condition, ME/CFS) all of these things were part of the Lupus. And most importantly, there was a treatment. A pill that I could take that should make me feel better. I left that appointment feeling the first bit of hope I had felt in about 18 months.

I know that may seem strange, that I was happy to be told I probably had a serious medical condition; but I'd had 18 months of trying to get people to believe me when I told them how sick I was. Months dealing with the 'yuppie flu' label thrown at those with ME/CFS. And months of my health just getting worse and worse. Finally, someone was agreeing with me that my body wasn't working right. And more importantly telling me they could fix it.

The Rheumatologist ordered more blood tests, and I had these done between Christmas and New Year.

Over Christmas my health got worse again, Much worse. I was in constant agony. My hands, feet, knees and hips stiffened and HURT. Like lying in bed crying, hurt. Like, take all the painkillers you can, get maybe an hours reprieve (where the pain lessens, becomes bearable, but doesn't completely go) and then back to crippling agony again. When it came time to go back to work after the New Year, I couldn't get out of bed.

You know, I'm still not making clear how sick I have been - I haven't been able to bath or shower myself in over a year. Even when I was feeling 'good' and going to work, I'd come home and collapse. I couldn't move, couldn't make food. So Gary has been bathing me for all that time. Most days I can't get dressed, because if I did I'd be too tired to do anything else or I'm in too much pain. Often, Gary has to carry me up and down the stairs because my knees and hips hurt to much to carry my own weight up them. I lost all of my independence. Since Christmas, I've left the house maybe a handful of times (and that includes trips to the Doctors/hospital).

So, come mid-January I'm starting to get frustrated. I'm waiting on the results from the Rheumatologist's blood tests. So, I ring the hospital and get put through to his secretary. She tells me that I was Vitamin D deficient, and my GP should treat me for that. And that the immunology results haven't come back yet. I get the Vitamin D from my GP, it makes no difference to my symptoms. So at the end of January I chase the Rheumatology dept again. I speak to the Secretary and she tells me that my results have come back, but won't tell me what they are. She assures me that if I needed to be on treatment I would be, and that I'm 'on a list' waiting for new clinic appointments to see the Rheum.

After this phone call I was devastated. I believed what she told me about the treatment. Which meant the blood tests had to be clear and it wasn't Lupus. I saw my dreams of an easy treatment, and improvement in my health, vanishing. I cried, sobbed on the phone to Gary.

But, the more we talked about it, the less sense it made: if my blood tests were clear, why did he need to see me again? The Rheum knew I had been sent to him to rule out other diagnoses before being referred to the ME clinic. So why would he waste my time and his to see me again if the results were clear? Why not just write to me/ my GP and say there's nothing Rheumatological wrong.

In early February I had another appointment with my GP, and I discussed this with her (my original GP retired in December, and I am still heartbroken, coz he was awesome). She agreed that what the secretary was saying didn't make sense, and said that they would chase it up.

Around a week later, I got a call from the GP surgery, in which they told me EXACTLY what I had already been told by the Rheum Secretary. I was fuming. They hadn't gotten any further than I had, and when I challenged this I was told to ring the Rheum secretary myself and 'explain it all to her'. Like I hadn't done this several times already.

By this point work were beginning to get a little antsy and I was starting to get really worried about keeping my job, I had nothing new that I could tell them, no idea if I was going to get better or when I might be able to return to work.

So, I waited for my appointment. In constant agony. Unable to care for myself. Unable to leave the house. Pretty much bed ridden. Until the beginning of April.

I made Gary take the day off work to come to the appointment with me. I'd done some research, and now believed that Lupus is the correct diagnosis. There were other symptoms, that I'd not really thought about, that were explained by this diagnosis. And I also knew at this point that blood tests alone could not diagnose/rule out Lupus. So Gary and I went to that appointment ready to battle for a diagnosis of Lupus and treatment.

At this appointment we were called in to see a nurse, we thought initially for a chat before seeing the Rheumatologist but it became apparent quite quickly that this wasn't the case. I explained that I was experiencing worsening symptoms and that the Vitamin D hadn't helped (I mean, really?! Did they actually think a vitamin D deficiency could explain how poor my health had been for over a year?!)

After a few minutes the nurse explained that my blood tests had been inconclusive. My double stranded DNA test was positive (I'm not really clear what this test is, but it's something to do with anti-bodies and break down of proteins, I think) but none of the others were. This is apparently 'unusual' (yeah, typical of my body to be weird). So the nurse said that she wanted to repeat some of the tests. She went off for a chat with the Rheumatologist and came back saying that my diagnosis is 'Mixed Connective Tissue Disease or Lupus'. She said I don't have enough of the symptoms of Lupus for a diagnosis without a positive blood test (I disagree, and actually the Rheum pretty much told me I had enough for a Lupus diagnosis in the first appointment. He ordered the blood tests to confirm the diagnosis). But, she said the treatment for both conditions is the same, and she gave me a prescription. She also told me it would take about 8 weeks for the medication to have an effect.

At this point Gary was furious (though he was polite and civil about it). Why hadn't they told us this when they got those blood test results on the 29th January? Why had I spent two months in complete agony when I could have been on the treatment? Her response was 'you should have rung us', to which I replied 'I did and so did my GP'. Rather than offering an apology or attempting to understand our point of view the nurse got defensive. She told us that whoever had reviewed my results had seen that I was being called back in to the clinic and decided that the diagnosis and treatment could wait until I came back in. I could almost see the steam coming out of Gary's ears. He asked if someone would contact me this time about the results of the blood tests and the nurse replied that, no they wouldn't, but 'it doesn't matter anyway because you're on the treatment now'. So apparently having a name for my disease is completely unimportant!

I've been on the medication for 12 days now, and although they told me I wouldn't feel any different, I do. I've had less pain, and the fog has lifted. Some of this may be placebo effect, but whatever, I don't care. I'm just glad that I feel better. Over the last twelve days we've alternated between being furious with how I have been treated, by my blood test results and diagnosis being withheld; and being excited and hopeful about how much better I'm going to get now I have treatment.

It's been a long and hard journey. It's taken 2 years. During which time Gary and Cassius have had to care for me. They've been amazing and I couldn't have asked either of them to be more understanding or supportive. But we finally have a light at the end of this very long, very dark tunnel.

This post may meander a little, it may seem unfocused and not have a clear point or path, but that's because that's what this journey to a diagnosis has been like, It's been a confusing and frustrating mess, filled with pain and exhaustion. But, hopefully, we're through the worst of it now.