A Thank You

[Jazzy21]

A great thanks for all the support from you when I asked my question about often feeling with this disease medical professionals sometimes dont believe your symptoms. I got proof of this today when I went for a routine blood test. My practice nurse told me that the neurologist I had seen had written to my GP expressing that my peripheral vision loss was most probably part of a mental health condition. To say I am upset is an understatement and in no way help me with my current blindness. I am also deaf and physically disabled due to this disease so no wonder I get a bit down sometimes. But that is not why I have lost my peripheral vision.

[frisky]

I feel so much for you this is cr@p nobody deserves this treatment! Bad enough that we have this horrible illness without being treated like idiots!!!! Gurrrrrrrrrrr!!!!! Make me so mad! Sending love, wish there was more I could do.....

Anna x

[Jazzy21 in reply to frisky]

Thank you so very much. These people can make us feel so much worse just because they dont know the disease. We have to live with it with professionals who at least for my experience dont know what they are talking about. We are so let down in Scotland.

[andreafm]

Hi Jazzy21

I had this happen to me in a report written 6 years ago by a neurologist I had seen as an in patient, and I was also so mad that I filed an official complaint and insisted that they sent me to a psychiatrist for assessment, before they wrote me off.

I said if my mental health was capable of producing so many symptoms without there being anything wrong, then I must need treating by a psychiatrist.

My G.P at that time ironicly said he didn't think I needed to see a psychiatrist, but I insisted and eventually went to see a clinical psychologist who wrote a fantastic report expressing that my main problems were that I was chronicly fatigued through having to deal with a medical system that hadn't diagnosed my condition properly. She also wrote her own observations of my neurological symptoms and made suggestions of a re-referral to another neurologist with experience.

It was very frightening at the time and was quite a risk as I didn't trust doctors by then and wasn't sure if seeing a psychiatrist would make matters worse. But I had been round and round in circles for some years and had just about come to the end of it all.

It worked for me and I even gave my new neurologist a copy of the report for him to read before taking me on.

I am still with him now after 5 years and now no-one ever suggests things are part of a mental health condition, other than the overall stress and fatigue of having this bl.....ddy horrible condition.

Hope this is of some help

Andrea

[Jazzy21 in reply to andreafm]

Thank you for this. I hope to one day get a neurologist who is good at the moment they will just go with the report I will just see what happens. Seeing GP next week so fingers crossed.

[devonshiredumpling]

I've only just logged - gone midnight - cause I'm on a tired jag at the moment. When I read y our post I was so incensed. Bastard! What on earth is the matter with these people? All I can do is send my love and hugs - which I'm sending by the bucket load xxxxx

[lesleyg]

Hi just reading all these posts.

I have a lovely neurologist here in Australia. I told him that I was quite sure I had 'neurotic' written across my files with some of the doctors I had been to. He agreed and said that he starts off by believing the patient. He also grinned and said that he deals in weird #@#@ - I had to laugh.

Lesley

[devonshiredumpling]

I haven't been able to stop thinking about this, Jazz, and I can't help wondering if there isn't enough here for you to take action? There's gross negligence if nothing else. I am so furious about it.

[SarahW1]

OMG !!! I am furious!!!! Jazzy my heart goes out to you, when will the medical profession take us seriously! Xx

[SuenMike]

I feel for you, you poor thing. I hope you can find health professionals who will look after you appropriately.

[bailey23]

OMG!

I feel for you. Before my diagnosis my GP kept saying I was depressed and stressed. I probably was due to 'not knowing' what was wrong with me! I have since moved and got a lovely GP who has gone out of his way to learn about the disease and is always on hand if I need him. I kept getting severe headaches and before I kept getting fobbed off and told it was stress or migrane! When I had my new GP he sent me for a MRI and this showed I had Cerebral Vasculitis (Swelling of blood vessels in brain) and I finally felt relieved that someone believed I was not 'mad'.

keep you chin up and loads of hugs to you!

Angela