"Delays in getting MS Diagnosis"

About: Croydon University Hospital / Neurology

(as the patient),

In September 2012 I had a strange sensation as parts of my body were numb or desensitised, and a feeling like a girdle had been placed around my rib cage. I reported this to my GP. He told me to go away and if it hadn't improved in 6-8 weeks on its own then to come back. In Early November I had a few attacks which left me on the floor unable to stand, a lot of tingling in my spine and my hands were numb. I had blood tests for Diabetes, thyroid, kidney, liver and cholesterol. All came back normal. I was still having problems so I asked for X-rays which were done in December on my lumbar and thoracic spine. I went back to the surgery between Christmas and New Year and was told I had Osteoporosis, and was prescribed chewable calcium and pill to aid absorption of the minerals. I accepted this at first.

As I had been on Depo injections for contraception for about 12 years I had a Dexa bone density scan at age 40, and 45 both of which were excellent, so I couldn’t understand how it had gone so badly astray at age 49 (only 4 years). I went back to family planning and got copies of the scans and went back to my Dr. It took some arguing but I was finally referred for another Dexa scan and to the MCATS, Musculoskeletal unit at Croydon University Hospital (Mayday).

I had the Dexa scan and the radiologist said I still had excellent bone density in Feb/March. She looked at my X-rays and said that it was obvious from the ‘spurs’ developing on my spine that I had osteoarthritis and not osteoporosis, and was appalled at how the surgery could have made that mistake. I went back to my Dr, gave him the news and was put on pain killers. I was still having spasms in my back, the tingling in my spine and numbness in my hands.

MCATS sent me for an MRI scan on my neck. When the results came back, they referred me to Neurology as there were areas of ‘myolopathy’ which they were unable to explain. I saw a Dr in May, had a course of steroids which did not improve my, condition. I had two more MRI scans on my head and neck and was diagnosed with MS in September 2013. Looking at my medical history my new Dr believes I had my first relapse at the age of 35 when I lost the sight in my right eye over night. It lasted for about 8 months, and I have never recovered full residual vision.

If I hadn't pushed my GP, and given him the dexa scans then I would probably still now be taking shed loads of calcium for a condition I didn't have. My experience with my GP ended when the MS team at St Georges hospital sent him a protocol sheet of what steroids and course of action he needed to follow if I had a relapse, and he refused to do it. I said ‘so what are you telling me – If I have any problems which may be related to my MS I have to go to A&E’, and he answered – ‘yes’. I left the surgery and immediately signed up with Headly Drive surgery. My new doctor is very easy to talk to about problems, they do urine tests straight away (it can be damaging for people with MS not to be treated immediately if they are infected) instead of sending away for analysis, and I asked about the protocol and he is happy to comply.

My only other gripe is the lack of an MS nurse in the Croydon area. I have to travel to St Georges in Tooting to get access to both an MS nurse and disease modifying treatments for my MS. Like many others with MS I suffer from fatigue and the 1 ½ hour journey there by public transport for a 15-20min appointment and 1 1/2hrs back leaves me completely drained. I have since diagnosis petitioned both the NHS and my MP Gavin Barwell on this matter.

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