Catch up 1 – medical/neuro

It’s been a while since I wrote on here. Last I wrote, I was waiting for the MRI and nerve conduction study in, although thar one may have already been done.

I had them both done. The nerve conduction study wasn’t done properly, I know this because my letter said 20-60 minutes and I was out in 10, and that includes transferring to the table, whipping my trousers off and giving a brief history. They put one sensor on 2 places on my lower right leg and put one needle in my right thigh, and that was it. That was the extent of my nerve and muscular testing.

I got a letter saying that the MRI showed that I have a T7 compression fracture and wedging of T8.

I had to keep on at neuro to give me an appointment to discuss the MRI. I eventually got an appointment in May 2019.

Well, that seemed to go ok (ish). I had written a long letter with my autism support worker. I wrote down all my symptoms and explained my Autism etc.

The consultant was quite open in saying he was having to take the patients from the doctor I first saw because he left. Meaning he was under pressure from all of the new patients. He said he didn’t think the compression fracture was causing my issues walking. He didn’t do any sort of examination. He said that he would refer me to someone he knows in rheumatology. He said some people never find answers but he was sure that this person could help.

When I got his clinic letter I was fuming. I lost it and threw stuff! I had a full on autistic meltdown due to the crap he wrote in his letter!

Apparently he noted that I have PTSD and so it is likely that I have a functional disorder, that I am possibly converting psychological distress into physical symptoms. He wrote that there is nothing more that can be done from neurology and so was discharging me from his service!

So yes, I was absolutely fuming!

He also wrote things on there that never happened and I took credit for things my GP has done in the absence of neurology making appointments!

After speaking to my dad, I wrote a long complaint about his letter as, on doing some research, I found that a functional diagnosis is basically a bin to put the cases they don’t want to deal with and anything can be considered ‘functional’. I found there were functional disorder clinics run by neurology at London and Edinburgh hospitals as well as one in the west of England somewhere (I think Bristol but I am not sure). So he was also wrong that if it was functional, there is nothing to be done, otherwise there wouldn’t be these clinics!

He had no idea about my PTSD or treatment. He had no proof it was functional and an MRI which showed a spinal fracture and an incomplete or ‘limited’ NCS (nerve conduction study) was not enough to dismiss a physical cause!

I asked my GP for a second opinion. They wanted to send me to St George’s as that is where my gastro consultant is. Which I agreed was a good plan, and so that was done.

I then received a letter from St George’s saying I was to be seen in the functional clinic 😳

I again lost my temper at home! I asked for a second opinion not a continuation of the neuro opinion I saw before! my GP agreed that it wasn’t what was asked for and they referred me to UCLH instead, without sending any of the stuff I had done at my local hospital, so that they weren’t swayed by his opinion.

I finally saw a consultant at UCLH in January 2020.

She did examine me and found that I had reduced sensation from T-10 down. This was news to me as the first neuro at my local hospital only asked if I could feel the needle prick, not if it felt the same everywhere. Usually I am very sensitive on my feet which is why I wear socks all the time, even in bed. I hadn’t noticed the lower sensation until she ran the needle across the bottom of my feet which would normally tickle and I would react because I hate having my feet tickled, but I barely felt it and didn’t have the usual reaction. At the time I felt a little sad. I think it was because it was another symptom, something missed due to the poor nature of my local hospital.

I think part of that was frustration too, that again, I was being failed and not listened to and not given the care I needed. It is, according to my local CMHT clinical psychologist, a trigger for me due to my PTSD.

She said she would get the test results from my local hospital and do a repeat MRI, and do full electrical studies etc and she would see me within 3 months.

Well, before Covid -19 hit, I got a letter stating my next appointment would be November 2020. I was extremely frustrated, at this rate I wouldn’t get a diagnosis for a long time and during all this mess I had found wheelchair rugby and wheelchair basketball. Without a diagnosis, I have to fight for my place in the basketball team against able bodied players. I also can’t play in wheelchair rugby 5’s without a diagnosis. So this was even more important to me than just finding answers.

I was starting to get really fed up with my clinical psychologist, when I said that getting a diagnosis isn’t asking too much, she said it was asking too much. She said it isn’t good to have lots of tests. Lots of tests?! I had an MRI which showed a compression fracture and a limited nerve conduction study – I haven’t had hardly any tests!

Then she decided my autism must have something to do with it after the local neuro 🤦‍♀️

She thought I might have EDS, which I don’t meet the criteria for.

I don’t want just any diagnosis, I want the right one with proof that it is what they say it is.

So when I wrote the complaint about the local neurologist, I also wrote one to my local mental health service’s trust, basically saying that if it is functional and I am converting psychological distress into physical symptoms, then when they could and should have diagnosed PTSD in 2007 and didn’t, I might have resolved some of this distress and so wouldn’t be in a wheelchair. I was hinting that their failure to diagnose was the reason I was in a wheelchair.

This was interesting as they then got me into the complex trauma service. More about that in the next catch up, which is PTSD or C-PTSD

My personal story – Going from fit(ish) and healthy, to tube fed wheelchair user

It has been a full on 2 years that has seen my health deteriorate massively and progressively.

It is mad to think that 2 years ago I was walking miles (walking from London Bridge train station, along the Thames via Southbank, to Parliament/Big Ben, up through St James’ Park, to Hyde Park, through Hyde Park, to Kensington’s Holland Park-  plus walking around Holland park and Hyde park for hours) catching Pokemon on Pokemon go…… now I can barely walk 10 metres to my car.

It started with just feeling fatigued a lot, not garden variety tiredness, but need to sleep 14 hours a day,  fatigued, where I am used to 6-8 hours sleep. I went to the GP but because of my communication difficulties, I couldn’t explain how I felt or if there were any other ‘symptoms’ that the doctor needed to know about. So I was given a blood test form and went for my blood test. It came back normal levels for everything.

I repeated this a couple of times over several months. No one ‘likes’ going to the doctor, but I have spent years being fobbed off by doctors and treated like a child. I don’t go unless I really really have to, and that is usually when I don’t feel well enough to look after the kiddo.

My advocate, who is amazing, but really went ‘above and beyond’ as did my LIMA (low intensity management for autism) support worker/autism specialist- came with me to the GP when I explained that I was struggling to eat and drink enough.
My GP kept sending me for blood tests and said that I wasn’t ill enough for any help … yet. She didn’t think to make referrals or anything, just left it to the point where the LIMA support worker phoned an ambulance as I barely had enough energy to walk to the loo in my ground flat.

The next few months were spent in hospital, not being listened to, with consultants with huge egos and no empathy.

I couldn’t keep food or fluid down. I lost weight, and was constantly dehydrated. After several tests, and then a few more, I was referred to the hospital psychiatrist, because Autism and PTSD must mean that because it wasn’t an obvious thing, it must be in my head! (EYE ROLL).

In the end they couldnt keep me in hospital indefinitely using nasal gastric tubes (their policy is that adults are not allowed NG tubes at home), I was cleared by the eating disorders team as not suffering from an eating disorder, so they had to come up with another option. In the end, I had a PEG tube fitted, and as soon as I was allowed, I came home.

I have since been referred to St George’s Hospital in Central London to see top specialists.

With being home, fed enough and being hydrated I felt a lot better in myself, but that is when I started with the severe fatigue again and then my muscles in my legs gradually over a couple of months, stopped working like they should. According to the physio I have global muscle weakness which is impacting on a pre existing knee condition- but, they dont know why.

I was given a walking stick, and the physio agreed with the GP that a wheelchair would give me the chance to get out a bit more for longer days as I just cant walk far enough. So I have a very very basic folding active user wheelchair. It does the job, but I will need a slightly better chair down the line as it is still too heavy as it is not an ultra light chair and there are a few add ons I cant use, which would make my life easier, because of the way the chair folds. There are also a few other things which make the chair not exactly suitable for me longer term. However, I do love the chair as it has given me my freedom back a little. Even if I do need extra help to go to places.

The GP referred me to neurology in the end, I don’t even think she knows what is going on. So far the only explanation is that is could be nerve signals from the brain not working properly.

So when I get asked why I use a wheelchair, and have a feeding tube… my answer is not simple. It is frustrating as there is nothing I can do to make my situation better.

Physio wasn’t going well at all. It was confusing and made no sense. The strengthening exercises were about moving to a range of low discomfort and then holding for 5 seconds, which then caused ‘severe discomfort’ and he said to not do anything which causes severe discomfort.

I also hated the fact that the physio department in the hospital was a long walk which meant I was barely able to do the basic movements by the time I had got to the waiting room and then got to the therapy room. It probably isnt actually that long, but just the thought of having to walk to and from the car even with the stick, just filled me with dread.

I had one of my ‘screw everything’ moments when I was stressed and cancelled all future physio sessions – not that it matters because their website says they don’t deal with neurological conditions – and seeing as I am being referred to neuro, it could be neuro – so I don’t think it actually matters.

So that is how I got to where I am with my failing physical health.

32 years old and my body just doesn’t want to do what it was designed to do.

My mental health is also sketchy with the PTSD – maybe if I were a horse they would put me down… But I’m human – so I get the opportunity to struggle on and try and figure this crap out and try to make the best of the situation.

Although there are days where I think that whoever first said

When life gives you lemons – throw them at what/whoever is giving them to you

Is a bloody genius!

I guess a post on ‘why I hate the fact that now I am physically disabled and autistic – I have double the pressure to succeed and “overcome” my disabilties to make some NT able bodied people get the warm fuzzies’ will be my next post