I saw my neuro-consultant last week, the first time since I was released from hospital back in January.
I took notes, asked tons of questions and spent the entire consultation in a complete brain fog. He had to tell me three times where I had to go next for a blood test. I thought I'd be waiting a while for my letter but it came through today, less than a week later.
I've always had problems with Doctors and hospitals, I get the feeling that they don't believe what I'm saying and that I'm making up symptoms. I don't know why, I guess I've been fobbed off quite a few times. Last year I went into hospital in an ambulance with crippling pains in my side. Now, I'm fifty years old and I know what most 'normal' pain feels like and this wasn't normal. By the time I got to hospital I'd had an entire syringe of morphine admitted every two minutes until the pain started to feel a bit better. In fact by the time a Dr came to see me in a cubicle I was practically floating with delight. The Dr proudly claimed that I was no longer in pain and could go home. So I did, I can't even remember how, I was so high on morphine. I slept for the rest of the day. The next day the pain was not so bad so I just got on with it, like you have to. I never had any explanation of what caused that pain but it's not come back so why should I worry? Afterwards I did think well why did the Dr who examined me think I was in hospital if I wasn't in pain. Did he not take into consideration just how much morphine I'd had to ease the pain. He didn't seem to be bothered as to why I'd had it in the first place. You can see why I am a little wary of Doctors and why I tend not to complain much.
When I had my TM attack I refused a trip the hospital in an ambulance. I couldn't face it being 'nothing' again and walking away like I was some complete hypochondriac.
I got my brother to take me to hospital later the same day and ended up being admitted for two weeks. I guess it wasn't 'nothing' then.
Anyway, I'm waffling on again, so I get back to my letter today.
Apparently I only have a 'possible' diagnosis of TM. All my tests came back clear and apparently my scans were normal, despite a Dr telling me, in front of my partner, that I had inflammation in two parts of my spine. This is a little confusing to say the least.
So, do I, or don't I have Transverse Myelitis? Your guess is as good as mine.
I do have many shared symptoms with other TM sufferers though, so I think the diagnosis fits. I guess the consultant wants to be more sure.
I had my reflexes tested and they were brisk with bilateral finger flexion jerk, Hoffman signs and Bilateral Extensor Plantars. Sorry for getting technical on you but they are exactly the same as when I was in hospital and I've googled them all. Basically they are all common indicators of spinal cord damage.
I had a blood test on the day for anti-GAD antibodies and the letter explains that this was to rule out Stiff Person Syndrome. This was new one for me, I don't have it, and I'm very pleased about that.
Next step is an EMG which is some sort of muscle test. It is quite obvious that I have muscle stiffness and spasticity and my consultant is trying to rule out everything that could possibly cause this.
So, I'm kind of in Limbo Land! I think Transverse Myelitis fits, but my consultant is wary of putting it as a direct diagnosis, so I don't have a diagnosis. This makes me feel confused and wary. If I know what's wrong then I know I will be getting the right treatment. Even though you can't get a direct prognosis with TM at least I can 'hang out' with other TMrs and learn from their experiences.
Once again, even though this sounds silly, I feel as though I'm imagining everything, that it's all in my head, or I'm making it up. Even I couldn't imagine this, could I?
Monday, 19 September 2016
Even I Couldn't Imagine This!
Even I Couldn't Imagine This!
Anne Stone Sweet
consultant|diagnosis|doctors|EMG|hospital|limbo|spinal cord|tests|transverse myelitis|