neuro appointment

After waiting nearly 3 months from my gp making a reffereal i have got my neurologist appointment on august 3rd yay lol

so pleased for you it has been a long wait

Thankyou hope your okay x

Hi Sparky I am a little confused at the moment I saw a neurologist there was a cancellation appointment. He seemed okay but in under 10 minutes he said my problems all stem from my brain messing with messages I can’t remember what he called it and he refused to write it donw for me he said it would all be in his letter. He briefly checked some reflexes said everything was normal. what ever this is he said it is unusual for it to cause so much disability but that some research his friend has done shows it is more common in people who get some gain either financially or other out of being like this ie they are claiming benefits. I and my husband felt he had already decided what he thought was wrong before I even walked through the door.

I am waiting to see what he says about his findings as a neurosurgeon said my reflexes were brisk and the plantar ones wrong and I had a positive Hoffmans ,but this neuro said they were normal I know they were brisk, to get any movement out of my feet on the plantar one he jabbed at the soles of my feet with a needle breaking the skin to get a weak movement.

He said there wasn’t much could be offered to me exercise programmes were out of the question, physcology would only work if I believed it would and then there was only a 20% chance of it helping me deal with this and the person qualified to give it has a closed waiting list of 3 years and 180 patients.

I hve had a mri on my neck and a small area of my back emg were normal Gp has done bloods to rule out deficincies all normal.So I now feel I am a fraud and a waste of time and space on this planet. Luckily I started councelling this week and he thinks this diagnosis was reached rather fast so does the physio I am seeing privately.

So I am waiting to see what his letter says but I have felt unable to post about this really as I feel I have no right being on here.Take care and I hope you get the answers you need. Sue

Great you’ve got your appointment. I’ve had a 4 1/2 mth wait so far and mines August, almost 5 mths from the start of this relapse, that’s all but gone now. Was hoping for an MRI before i saw him but not looking too positive on that front. All ready to discuss DMD’s when I see him - I’ve had plenty of time to research!

Oh sue im so sorry i would be confused too with that know your own body and know somthing is not right.And as for the financial gain bit that is disgustingi feel for you i really do its disgusting oh im so mad bless you you need to get a second are not a freud we are all going through the same journey all be it in different ways.please if you need to talk message me chin up. Lynda x

Oh sallum thats a long wait they could have arranged an mri in that time so the results are ready for the neuro hope all goes well for you .

Thanks Lynda I will I am going to see what he has written then take it from there. It is muggy and humid again here Hubby is cutting the lawn so the sparrows can hop about easier. Take care and good luck Sue

Sue I think he has been wrong in way he has describe things to you, if everything thing comes back clear, ( a long process ) it means there is nothing physical that causes your symptoms…this don’t mean they are real!! Have you had evoked potentials done? Your nerves in your cns, can send wrong message to brain…this is real!! Not in your head…these signals can send pain messages wrongly to your brain…the pain you feel is real!! I do believe it’s called functional…it’s a long process to retrain your brain…example…when you have a headache signals are sent to brain about pain in head…but there isn’t a physical problem that sending these signals, therefore functional, tablets will help on short term…another example…when you get butterflies in your tummy…a feeling you do get but don’t mean you have butterflies in your tummy, but signals are still sent, not physical, but functional…sometimes trauma in past can come up years later and it can help to discuss these problems through, again this isn’t saying your not in pain, it’s real…it’s all about retraining the brain, which is a complex organ, which means it takes time, please don’t feel a fraud, if your diagnosed with functional problems it is real…you are not a fraud, it is a positive diagnoses, fibre is classed as a functional problem, but pain is real, there is loads of well known names of diagnoses which are classed as functional…it is real, the pain is real, sending you a hug, as this is often I talked about, I’m sorry but I’m dam right sure that people who suffer from functional problems would rather be pain free and normal than in pain and struggling through daily problems and rely on benefits,

be positive and stay on here I’m sure others will agree your experience and comments are very important to others on this site, others on this site no doubt have had same symptoms as you, you understand how they feel

keep talking and posting

sending hugs and love

heidi x x

Hi ya, fantastic news, on the wait for a diagnoses… Seems along way away but at least your get assessed by someone who can help… X x

good luck Hun

please update us x

Believe me, I have been phoning my consultants secretary for a couple of months to get it sorted and keep being fobbed off with , we’ve not received the ltr from your doc, the secretary was away, its prob in a pile on his desk…to name a few if their excuses! She’ll probably have me up on harassment soon!!! x