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i feel completely "fobbed" off!!! :o(

I have posted before regarding my symptoms.

i have been to see neuro…what a joke!!!

He spent the first ten minutes telling me i had cyst in my head & reassuring me it was nothing to worry about but will do a follow up MRI in 12 months. He then ‘mentioned’ the referral letter my doctor wrote, suggesting MS, then instantly dismissed it with no explanation. He said it was one of those things that can’t be explained (after 10 mins of meeting me… HUH?)

i have recieved a copy of the letter he wrote to my doctor and i have to say I am appalled at how pathetic it is. Half of it is made up and the other is just waffle. Apparently I am a “very pleasant, right-handed young lady”!!

There is no mention of my MRI, doctors letter or his suggestion.

After all the waiting i am right back to square one.

I feel like crying!!!

Hi

sorry you had a rubbish experience at neuro, it’s amazing how many people come away from these appointments confused and feeling like they weren’t listened to. I was at neuro last week and I’m confused as to what the conclusion actually was.

Did you have a neuro exam where they watch you walk and test your reflexes and movement etc?

Did the MRI show a cyst and no lesions?

It reads above as though the MRI showed a cyst so they have gone with that as a diagnosis and dismissed MS either on MRI and or neuro exam? It’s very difficult to diagnose MS so they tend to look for everything else it could be, if they don’t find anything else it narrows it down a bit. What does the letter say except that you are very pleasant lol

K x

The only examinations he did was… hit my knees, to test my reflex and look in my eyes, from a distance!

He was more interested in his coffee.(Fact!)

He ‘mentioned’ my Doctors letter, then instantly dismissed it. I know MS is hard to diagnose but can it be so easily dismissed? My scan showed no lesions.

I find it hard to believe that I’m worn out at 36 and to say it’s one of those things that can’t be explained, after ten minutes of meeting someone, is ridiculous!! (Sorry! He kept changing his mind.)

The letter is pathetic. My 5 yr old could’ve written a better one! There is no mention of my scan, my doctors suggestion of MS or the neuros opinion. I’m going to see my Doctor again but will have to wait as he’s on holiday (I don’t care he’s worth waiting to see). He did more tests than the neuro!!!

Rant over!!!..lol x

Lx

My last attempt at a post had more clarity but wouldn’t post. So i had to try and remember what I wrote.

Hello, Sorry you feel so upset after your appointment. Can I ask if you had a clinical exam before you had your MRI? Sorry, I’ve gotten a bit confused whilst reading (happening a lot lately)!! Just to reassure you, in the first letter to my GP, my Neuro put that I was a left handed lady who looked well :). It turned out that on one particular element of the exam was ever so slightly off but considering I was left handed it was okay. Sometimes the things we think are completely irrelevant are not to them. He hasn’t signed you off as another MRI is planned - a good thing. Good luck with your GP. Sam x

Clinical exam???..

Lx

Is this the first time you have seen a Neuro? I’m just muddled as you are having a follow up MRI, so I have assumed you had already seen a Neuro and from that appointment you had had an MRI and the appointment covered in this post was the follow up to discuss the results of the scan etc. A clinical exam is what normally happens during the first appointment, it can help determine if an MRI is needed amoungst other things. Sam x

I know what you mean husband seen neurologist and an emergancy came in ambulance.The consultant hubby was due to see had to see the emergancy and we got a feeling like he was trying to rush us through.He was told he has multiple sclerosis after lesions were found on spine as well as previous white spots and old lesions all over brain told he has had it years because of scars to brain.He was that busy he forgot to tell us what type of ms he has .I have now got to write and ask him the questions and answers he didnt give us. xx julie

No! My Doctor referred me for brain scan and to see neuro. After I had scan i then recieved another appointment for another scan with flair. I then went to see neuro.

Lx

i’m baffled. just recieved a letter from neuro regarding another appointment in September… Was not expecting that.

Thankfully I am so lucky to have a great neuro. It’s really bad to see the diffrence in neuros in the diffrent areas of the UK. Feel for anyone not having a great neuro to speak with. And more important to listen to us.

Did he explain why he thought you had a cyst on your brain i know that anything growing inside your brain would be worrying and to treat it as nothing is fairly discusting.Carnt you ask for another neurologist as second opinion? xx julie what about patients liasion service carnt you put in a complaint.xx julie

I have a pineal cyst, which is not causing my problems. I would just like to know what is!

I strongly believe it is MS, as does my Doctor but the neuro dismissed it after lookin at my brain scan. He just went on about cyst. He wrote me off with “it’s just one of those things that can’t be explained” and “wear and tear”… indiscisive or what??? so i wasn’t expecting to recieve another appointment from him, yet have one for september… mmmmm puzzled!!!

Lx

Just been reading about pineal cyst as i had never heard of it before usually found by mistake more common in girls aged 20-30yrs pineal gland small pine cone shaped organ in center brain used to make hormone melatonin to regulate sleep.Pineal cysts usually pea size but are closely watched to make sure they do not grow.Usually they remain the same size hopefully if thats what it is it will not grow or cause you to much problem.Get a diary and jot down things keep going doctors esp if you get any symptoms xxx julie

Are they doing a spinal MRI?
My initial MRI (brain and orbits) showed no lesions so MS wasn’t even mentioned and I was told at the time that it was “highly unlikely”. I was referred for a full brain and spinal MRI with contrast and they found two lesions high up in my spine and one speck of one on my brain which the neuro picked up but the radiologist had missed.

I don’t know what symptoms you have or why the GP thinks it’s MS. But in my experience, they tend to avoid mentioning MS unless they are sure that’s what it is.

I had a full neuro exam with a registrar where he watched me walk, tested reflexes etc. I also have hyperreflexia which showed up during the exam. The registrar went to discuss it with the neuro and then they both came back and discussed it with me and diagnosed me.

I wonder is a full spinal MRI maybe worth having to check for spinal lesions.

Hi Meme,

Thanks for your reply.

I plan on asking for a spinal mri…i’ve read a few posts on here that suggest certain symptoms can be more spinal related. My problems are more in my legs and arms, at the mo. Pain, weakness, strange sensations etc …pins and needles subsided but have started to reappear in my hands…I’ve also started vibrating. That used to happen in my feet but now it can be full body, strange!!!

My GP did more tests than neuro, where he watched me walk etc. he’s away on holiday at mo but will wait to see him. I will definately ask to have a spinal MRI…

Thanks for your advice x

Lx