"Lack of care and understanding"

I have been very unwell for over 2 years now and still going through the worst time of my life. In February 2023 I became unwell and ended up in ward 23A Ninewells (where it was a shambles from day 1). I ended up getting an MRI brain scan which showed up damage in my brain stem in the medulla. 

I’ve suspected I’ve got MS since this started but apparently all my medical investigations don’t show MS. I was given a 3 day course of IV steroids then sent home with oral steroids. I ended up back in hospital about 3 weeks later with symptoms spreading through my body. 

I got more steroids etc but on this occasion I also had bad spasms in the hospital and other things. I’ve been left with a left shoulder droop, weakness down my left hand side and my skin is very sensitive.  I’m extremely tired and fatigued all the time, I need to walk with crutches and I occasionally fall over. I get dizzy, very bad pins and needles etc….the list goes on. 

After having goodness knows how much blood taken and raised white blood cells count for over a year (my GP let me see the results) with raised protein levels in the lumber punctures I got, nothing has been done! I have had some MRI brain scans without contrast and the damage is still there.  

I’ve not been treated except with short course steroids occasionally for over 2 years and still I’m very ill. I’ve practically been left for 11 months with a significant brain injury with literally no treatment whatsoever or any care or follow up appointments by neurology in Ninewells until I’ve gone to my GP. At one point I was ill and had to go to A&E, where I ended up struggling for breath, losing my voice, and being very very ill and the neurology department didn’t seem to care whatsoever. My wife phoned my consultant’s secretary to explain things and when they phoned back I was told to go to my GP!…the shocking lack of care continues…..

The neurologist don’t seem to know what’s wrong with me, but don’t seem to care or don’t seem interested in trying to find out because they literally just leave me to get on with this debilitating condition without trying to find out what it is. (It may be Neurosarcoidosis.)

My life has been ruined by this as I’ve lost my job, my income, my ability to be a man and support my family and it is very tough! To hear your neurologist whisper to their understudy  that this is all psychological when you have a significant brain injury proven on an MRI scan does make you question life in general. 

You then give up because if that’s the experts opinion what hope is there?

I’ve questioned why the neurological department at ward 23A in Ninewells quite simply don’t appear to care about me and why I’ve been left to get on with things for practically 2 years without treatment, getting worse and simply not being able to live properly. 

If that is the attitude of the professionals treating you then how do you actually live your life being this ill knowing that you’re not going to get better because the professionals don’t seem to care about your treatment? 

I’ve been distraught with this for over 2 years now and still no further forward yet I get more disabled every day!

I believe the covid vaccine has caused this damage to me, but of course that has been completely denied! I was perfectly healthy before that!

I’m writing this because I feel that people need to know that the Neurolorgy department of Ward 23A in Ninewells, in my case, have shockingly let me down for 2 years now and it’s still ongoing! I am completely lost with this, my life has been ruined with this and the damage is definitely done as I’ve had no treatment for 2 years!! 

I’m not the type of person that complains and I’m very thankful for the NHS (the experience I’ve had with other departments and hospitals has been A1) but on this occasion the complete lack of care and compassion has let me down to the point where I’m now at my wits end as I cant take this anymore!