Neurological Rehabilitation Needed

Hi my name is Claire I am a 27 year old female from Salisbury, Wiltshire.
I have recently been diagnosed with Spinal Damage and Functional Neurological Disorder with Tremor. http://www.sth.nhs.uk/neurosciences/neurology/neurology-psychotherapy-service/functional-neurological-disorders
This disorder is very hard to understand so I have posted a website that explains it in great detail.

In November 2014 I developed acute lower back pain on bending over, I underwent acupuncture later that month but the pain began to get worse. In December I was then admitted into Salisbury Hospital due to chronic back pain this lead to being an in-patient for 2 weeks. I underwent an MRI scan which confirmed posterior disc bulge L4/L5 L5/S1 and an Annular Tear L5/S1 this is my two lower discs at the bottom of my spine. They managed to get the pain under control using a number of medications and I was able to go home to rest and wait for an appointment for Physio at Wessex Rehab in Salisbury.
Despite the amount of medication I was on, I was unable to undertake the Physio due to ongoing spasm pain in my lower back. The pain team advised me to try facet joint injections.
June 2015 I undertook the lumbar facet joint injections. Approximately a week after the injections I began to develop worsening pain.

July 2015 I was admitted into Salisbury hospital due to severe, acute, progressive back pain, which radiated down both legs. I had leg tremors and myoclonic jerks, Loss of bladder function and I had a catheter fitted. This lead to being an in-patient for 5 weeks. For three weeks I was unable to get out of bed and had to rely on the Drs, Nurses, nursing assistants and family and friends to help me, not only with my care but to try and keep my spirits high. At 27 years old you would never expect to have to rely on a catheter and be unable to walk. Even lead in bed my body continued to have tremors and muscle twitches despite the amount of medication I was on to help this. During my in-patient stay I underwent MRI and CT scans which showed my previous Injurys had not changed since November 2014. My nerves were not being compressed. I had a nerve conduction study and no structual cause was found.
I really struggled whilst in hospital and had a very hard time, I had countless tests and nothing was showing up that was causing my body to react in this way. After 5 weeks my mobility was a real struggle and my body continued to shake all over which I found extremely tiring and painful due to the shaking aggravating my spinal injuries. I was diagnosed with Funtional Neurological syndrome with tremors. I was aloud to be discharged under the condition I had a level ground bedroom and bathroom with a shower I was able to sit down in. I left hospital being able to walk around 10 steps using a walking frame but I then needed a wheelchair to be able to go any further.

Since I have settled back home I have had to rely on family and friends to help me with every day activities, I had lost the ability to be able to do anything for myself. I still have all of my previous symptoms but have worked hard myself at making my body stronger little bits at a time. I can now use crutches around the house but I still use a wheelchair when I am going out. I have hesitancy of my bladder, loss of memory, blured eye sight and episodes of presyncopal symptoms and a few syncopal episodes. I have my up and down days and I wouldn't have been able to get this far without the support of family and friends.

November 2015 I attended a Wessex pain review at Salisbury hospital. unfortunately I was told that they did not have any direct access to a programme that I would need through Wessex rehab. This was very disappointing as time was getting on and I Needed some kind of Physio as soon as possible.
In the mean time I spoke to my GP about this and he contacted my neurologist to see what she would suggest. She replied that I would need further medication and a neurological rehab programme.
My GP contacted Glenside Neurorehabilitation hospital to find out what I would need and for how long, Glenside replied that I would need a 15 week in-patient stay. As you can imagine the cost of this would be a lot of money. My GP got on and put a referral in to CCG to try and get me the funding for this rehab, with a cover letter from my neurological consultant. Unfortunately 7 weeks later I was refused the funding for rehab due to not enough evidence to support my case. As you can imagine again I was extremely upset, as well as all family and friends as it felt as though nobody was able to help me. I have been left since November 2014 with no Physio at all.

December 2015 a week before Christmas I had an appointment with my neurological consultant to find out where we could go from here. Bearing in mind I am still on a lot of strong medication for over a year now, it is scary to think that my body is relying on this and what it could be doing to my insides.
My neurologist had explained to me about my functional neurological syndrome in great detail and suggested I was referred to Southampton where they have a Neurorehabilitation unit to see what they would suggest or if they would possibly be able to except my referral. She then gave me a follow up appointment in 4 months time.

January 2016 I received a letter from Southampton who unfortunately did not have the necessary personnel in their team to deal with my particular diagnosis. I have had no further information about what is going to happen next. I have been off work since November 2014 I worked for the NHS as an Abdominal Aortic Screening Technician so this has also had more of an impact on the way I feel about the NHS. I am now registered as disabled. All of this has gone on for far to long and the quicker I get treated the more chance I have of getting back to normal again and living the life of a fit and healthy 27 year old.

I have created this fund to try and raise money towards the funding I need to get multidisciplinary rehabilitation. Due to needing multidisciplinary rehabilitation as you can see this can be very expensive. 

This is my last resort and anybody that knows me will know that I hate asking people for help.
They will also know that with the struggles I've been through and the lack of care I have been provided I wouldn't ask unless I really needed help. Your generosity and contributions are greatly appreciated.

Much Love to you all
Claire
www.helpclaire.com