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seanamarts

Wrongfully diagnosed with MS

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5 months ago I was diagnosed with MS ( multiple sclerosis ). I was diagnosed whilst being in hospital for which was quite a lengthy stay. It was my third time in hospital this year.

 

I wasnt surprised at the diagnosis as I had been ill for quite sometime and it had been suggested in the past that it is possible that this is what I was suffering with, but never had an official diagnosis.

I left hospital a few days later after being given a course of steroids to help with inflammation. which is a common treatment for MS.

 

I was sent home with Morphine and some other drugs. .

 

I spent the next 4 months not knowing how I was going to cope with this. I wasnt told what type of MS I had. I wasnt told what I was going to expect. I was informed that I would be treated with Physio for the stiffness in my legs, but then again I was told in March of this year that I was going to have physio but never had an appointment through.

 

just before I was due to see my consultant neurologist I rang the appointments department and was told I had only been referred in September and that it could be another few months before I was seen. This was for an urgent referral in March. I find walking extremely difficult and very painful.

 

Any way going off track a bit here.

 

After 4 months of trying to come to terms with MS, which isnt easy even though it had been suggested in the past, actually knowing hit me more than I thought it would, especially after I had been so ill this past year.

I saw my consultant and he queried why I was there. I told him that an appointment had been sent after I came out of hospital and I explained that I was there to get my results of the lumber puncture and to see what treatment I was going to have and what I was expected to happen now I had this diagnosis of MS.

 

he said I didnt have MS. I told him that I was diagnosed in July whilst I was in hospital, he said I was mistaken, I said I wasnt. I was getting quite upset and he kept showing me my file saying no where does it state I had been diagnosed with MS and he said that he had seen me in March and told me then that I didnt have MS.

He made me feel as if i was lying and I was completely mad.

 

I gave him a run down of the conversation and that the neurologist who had diagnosed me wanted me to stay in hospital for 3/4 months to see how the MS progressed. I explained that was impossible and I explained that I thought this was the reason for why I was to see him that day.

 

As soon as I had explained this he looked rather sheepish and realised who I was talking about. The neurologist that diagnosed me had left the hospital but he had been told not to keep telling patience that they would be staying in hospital for such long periods of time as it was unnecessary.

Finally he found my discharge notes and there in black and white it stated that I had indeed been diagnosed with MS.

 

At this point my consultant couldnt apologise enough. he then came across some more notes on my stay and saw that I had another diagnosis of a relapse of MS in my notes from another stay a few weeks after I had been discharged. These notes were copied and sent to my GP.

 

When leaving and after he had told me what was actually wrong with me, sort off, he said something about making a complaint with regards to what had happened and I was quite with in my rights to do so.

 

I didnt feel up to start making a complaint. I just wanted to go home.

 

I feel now I want to make some sort of noise about this.

 

Not really sure whether it is worth it or not. Not looking for compensation, but changes do need to be made to stop this sort of thing happening again.

 

Some help would be very appreciated thank you.

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I would think of recommending asking for a 2nd opinion from your doctor. That way for your peice of mind MS will be either confirmed or dismissed and would then be recorded as fact in your medical records.

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Thank you Zonker, this is something I will bear in mind.

 

I am going to try and see if I can get hold of any 'reports' that this neurologist has stated he has made in the past. My GP has yet to see one.

 

Im also going to try to get a copy of my my MRI scans.

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For medical records , you can do a subject access request, i think the maximum charge for having a copy is £50.

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For medical records , you can do a subject access request, i think the maximum charge for having a copy is £50.

 

I thought as much. Perhaps my GP could get them for half the price ;)

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The thing that jumps out at me is that the consultant on your follow-up appointment queried why you were there. Do they not review files prior to an appointment so they are fully informed prior to a patient's visit? Clearly not in this case.

 

I think a Subject Data Access is a good idea. Even if you do not make a complaint immediately it may be useful in the future and perhaps provide information that could be of use to you.

 

Would it be possible to follow up the physio appointment through your GP? Be sure to make it very clear that you are in pain and your mobility is affected. Try to establish a time-frame for the treatment. Your GP should also be able to provide you with more detail about your MS and perhaps refer you to a local support group. There is also likely to be on-line forums where you can find information and help.

 

I wish you well.

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