From GP to Diagnosis
[September 2016] – It’s been almost a year since I began to present with problems, trouble walking, tripping and falling over, visiting A&E, and generally feeling unwell. (see part 1) I visited the Doctors to find out what could be the underlying problem, after a few routine questions, and checking my ears for infection (balance and vertigo were high on my symptoms list at the time), she sent me for blood tests.
[October 2016] – The IT system that deals with blood analysis went down in Leeds. It took a long time to get my results back. There was no abnormalities present, I am aware I was tested for blood sugar levels and thyroid. The Doctor asked if I was feeling ok. I wasn’t. To get an appointment with the same doctor, I must wait several weeks. Funding and the NHS, is for another blog…
[November 2016] – I return to the Doctor and she decides that I should be referred to neurology. At this point, I know that something is definitely wrong, and I am sure that it is something similar to Multiple Sclerosis. Part of me worries what if I am wrong, and they don’t find anything. This feeling plagues me for some time. It is both relief and with grief to find out that I was right.
[February 2017] – After waiting some time, and my doctors chasing them up, I finally have an appointment with a Neurologist. I arrive prepared with my medical history – my perspective, and my symptoms over the last year. Making a record can prove to be really useful in these situations, as often you forget things, it is also important to include your family history of illness in this record, if you are aware of it. He carries out several neurological evaluations, and I also have my bloods taken for testing. He tells me from that examination and my history that I would need an MRI and possibly a lumbar puncture (formerly a Spinal Tap, but the fictional rock band stole the name).
[March 2017] – The MRI machine is located in a car park, in a trailer. It is quite something that an expensive piece of hospital machinery is kept in the car park, I am not sure if it travels elsewhere in the city. An MRI isn’t scary, for me anyway. I do not get too anxious about the actual procedures, more the results. I felt quite relaxed during the scan, it was a moment to have a nap. Although it is really noisy, my thinking took me back to the 1990’s and trying to place where I had heard that BPM before and on what dance track. I had scans of my brain and upper neck. Afterwards, I felt a little dizzy, but nothing untoward.
[May 2017] – Again I had to contact my doctor to find out how long the results of my MRI, would be. The longer I am waiting the longer I am not getting better, and yes it can be quite frustrating. I finally got an appointment with my neurologist, which was quite a short visit in a hospital in the outskirts of Leeds. He told me that I definitely have lesions on my cervical spinal cord, and that this is causing my symptoms. However, he wasn’t sure if it was multiple sclerosis, and his clinical diagnosis at this stage was that it was caused by the shingles (herpes zoster varicella) I had in September 2015. They would need to investigate more, and would require a lumbar puncture. My brain scan showed normal (which I like to joke, proves I am not crazy), but my spinal scan showed that I had lesions.
[June 2017] – So the date of my lumbar puncture arrives. It is very early in the morning, and I find it quite difficult to get myself moving in the morning. I have been feeling nauseous for the last day or so, and this causes me some anxiety as I am unsure of how I will react to the procedure. I have lots of bloods taken. And a cup of tea. The procedure goes smoothly, and I am very fortunate, as it is one of the trickier procedures to carry out. Afterwards, I feel exhausted and dizzy. I have to stay on the ward for an hour, so they can ensure there are not complications, and also so I can rest, there is also lots of tea (caffeine is useful in helping recover apparently, prescribed by the doctor! I don’t normally drink caffeine, so three cups should definitely do the trick). Once the anaesthetic has worn off, my lower back feels like someone has punched it really hard. I feel nauseous, weak, and exhausted.
[June 2017] – “Treatment is key for spinal tumours, as any damage it causes can be made more severe or indeed, permanent, if treatment is not sought soon enough.”
“If you have been diagnosed recently with a form of spinal lesion, ensure you get as much information as you can on your condition. Although initially overwhelming, with the the right care treatment alongside self-education, you will be in a better position to heal, not to mention feel empowered through your treatment.” spinalcord.com
I worry about my prognosis, as I have waited weeks between appointments, and not received a diagnosis. I visited my doctor, I have reached a point where I simply cannot cope with the neuropathic pain in my neck anymore (along with many other frustrating, painful symptoms). I sadly haven’t had much, if any, information given to me with regards to managing my symptoms from my neurologist. I have relied on web searches, and looking at medical websites when I have to google the terminology in the letters sent to me. I have used the MS Trust and MS Society for help with symptoms (even though I have not been diagnosed with MS, I have many similar symptoms and obviously the lesions on my spinal cord).
In the doctors surgery, I spoke about the pain in my neck, and how I couldn’t concentrate at work; fatigue and how I have so much time off work, but I am lucky that I have an incredibly supportive employer; drop foot and how my walking is bad and not getting any better. My doctor was incredibly sympathetic towards me, which I am grateful for, he listened to me and prescribed some medication that should help my pain (gabapentin, which is used for nerve pain, like I have – I think it is the location where sparks are flying, due to the nerve damage, I think of my nerves as like electric wires, and the coating on mine have been compromised). He also told me he would write to my neurologist, crying unexpectedly through pure frustration probably emphasised my concerns.
In the next blog, I will hopefully have news on my diagnosis.
I think our NHS is one of the best in the world, and I am grateful that I am able to find out what my illness is, but it does worry me how underfunded it is – with pay to nurses, for example, at an all time low, junior doctors facing atrocious contracts, morale is clearly something I know is affecting the staff. We have services that cannot cope, and patients that are waiting months to be seen, it runs across all departments. Central Government is chipping away at our wonderful NHS, and paving way for a private system, which the citizens of this country do not want. The NHS needs protecting.