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

Goodbye 2018

It is new years eve and the end of 2018.

For me the year has ended with the same questions it started with… “why is my body not doing what it is meant to do?” Only, it has got worse.

This year has seen me fight for me and what I need. Which is something I havent really done very well before or even tried all that much to do.

However, having my kiddo 10 years ago and having to fight for her to get the support she needed helped me understand how to fight. Seeing her struggle with anxiety over my mental and physical health has given me the push to fight for me, but really for her.

So I finally started EMDR trauma therapy this year. It had a 25-33.3% chance of success in ‘complex trauma’ according to the clinical psychologist and other resources. They are slim odds and I didnt manage to make it into that category. So that is a bit of a downer. I also dont particularly get on with the clinincal psychologist and her understanding of me, but also of autism in general seems poor. This isnt helped by my communication difficulties. So that is something I need to sort out quickly in 2019, I dont really have many options as in the UK there is no long term mental health service for PTSD. There is barely a short term service that will only do a type of therapy with a low success rate. Also the clinical psychologist is the lead for psychological intervention for adults in my area and is one of few people trained in dealing with trauma in the NHS in my area which doesnt help either. I cant afford to go private… which leads me to the next part

Not only did 2018 start with feeding tubes and eventually a PEG tube in february 2018, in May I started needing a wheelchair. Which was a load of hassle and the NHS couldnt provide me with one, so I had to buy one myself, which is why I cant afford private mental health care, as it will take me 3 years to pay back the loan for this wheelchair… I say this one, it was delayed but should be delivered on the 10th of January.

I am now under 2 different hospitals, neurology locally and gastro in london. I have an MRI locally and an Manometry in London in the first 2 weeks of January. Not looking forward to either, but hopefully they will bring me closer to the answers of what is going on with me, that have completely eluded us in 2018.

PIP (personal independence payments) – A UK disability benefit paid in 2 rates (standard and enhanced) in 2 areas (daily living and mobility), that has been tough this year. Updated them on my PEG tube being fitted and they took all my daily living away, and they have decided, with no proof or evidence that I can walk 200m unaided with no difficulties. I managed to get my daily living back but at the enhanced rate, but they wouldnt reconsider the mobility. My advocate is helping me fight that in 2019.

After 2 years, I finally have a personal budget/Direct payments – I should find out in a few days if anyone has responded to my advert for a support worker/personal assisstant. That was a stressful process with a social worker who didnt do what she was meant to when she was meant to do it.

The only thing I never really had to ever fight for this year was things to do with my kiddo. Her social worker is awesome, her school are awesome, everything seems to be going well. Although I am pretty sure her DLA (child version of PIP called disability living allowance) renewal will come early. It is supposed to be when she turns 12, but she is 11 in February and I wouldnt be surprised if her forms come at the end of 2019 and her rates get reduced before 2020. It wont be a massive deal as long as my rates of PIP get sorted. She would still meet the criteria, but it is much harder to prove now that she is more settled in school.

I am pretty sure I have made it through to 2019 out of pure stubborness! Everytime I have been close to breaking point, I have stubbornly refused to break and come up with some way of feeling better about things- with the help of my advocate of course. She has been brilliant this year. I dont think I could have coped without her support.

I am hoping 2019 brings me answers and support and that my kiddo stays settled and happy.

I also Hope that 2019 is kind to everyone and doesnt make things harder than they already are.

All the best

Trish