I’m new to this so sorry if I’m doing this wrong. Went to see neurologist yesterday who told me as my MRI was clear it wasn’t m.s and therefore all in my mind. Took in video of me having seizures ( just like dystonia) and he said he didn’t know what it was maybe a panic attack! I have these seizures about 2 to 3 times a week. I have had these turns in front of other docs who have both said they are some sort of seizure. He has said maybe I should see a psychiatrist. Came out feeling about an inch high. I have loads of of other symptoms pain in my head and eye. Poor balance,pins and needles,tiredness, bladder problems confusions,speech problems and the list just goes on and on. Have to go back to g.p tomorrow but just feel like curling up into a ball and crying. Any ideas where I go from here.
hey
I am new here and not an expert - but your situation sounds horrific - i am currently waiting on an MRI and this is my worst fear -
is it epilepsy? has any one mentioned that? did you get a neuro exam? what were the findings?
can you ask for a Lumber Puncture
Jx
hey
I am new here and not an expert - but your situation sounds horrific - i am currently waiting on an MRI and this is my worst fear -
is it epilepsy? has any one mentioned that? did you get a neuro exam? what were the findings?
can you ask for a Lumber Puncture
Jx
Hi 
I think it’s disgusting a neurologist wud say it’s all in your mind that’s not fair and won’t make you feel better! How has your doctor been about your syptoms? Do you feel he/she is trying find out why you are having seizures? If you are not happy with your doctor then you must see another! Start afresh and see another doctor if you can or ask the doctor you have for a second opinion with a different neurologist at a different hospital as you are obvious very distressed at the thought of not being taken seriously! It’s not right you have been treated like this and write down your syptoms and times of day you have a seizure and if theres anything you might feel that triggers them. Don’t be fobbed off ! You need to know what’s. happening and why and anxiety can make some. syptoms worse. Wish you all the best and don’t give up!
Hey Shellyon e
That’s disgraceful your neuro said that. I had a few issues with my first neuro - not as horrific as that but enough to make me feel like he was doubting me. Go back to your GP - hopefully he/she is on your side and can help by referring you to anothewr neuro.
Do keep an open mind about potnetial diagnosis - many other disorders can give rise to symptoms that appear similar to MS.
Good luck hope you get to see a good neuro - I know what it feels like to be made to doubt your symptoms and it’s not very nice.
Reemz
X
Hello and welcome
That sounds like a very dodgy decision by the neuro! Sure, it may not be MS, but there are plenty of neurological conditions that do not show up on MRI. Also, seizures are supposed to be taken VERY seriously and certainly not written off as panic attacks without any proper investigation!
Have you had any tests apart from the MRI? (Epilepsy is investigated using EEG and ECG, not MRI.) If not, then you should go straight back to your GP and insist on seeing someone about your seizures.
Actually, you should do that anyway!
Good luck.
Karen x
Many many thanks to everybody that replied to my message yesterday. Went to see G.P today to inform him what neuro had said and he was gob smacked. Neuro has only done an MRI and refused to do anymore tests as MRI was clear. G.P recommends I have a private consultation which I know will cost money but to tell the truth I feel so bad I’m willing not to eat for a month just to get some help. But the caring replies I got back off you all really gave me a lift, it was like getting a big cuddle. Thank you all. Shelley.x
Just read your post, it is awful to be told that it is all in your mind. It makes you doubt yourself and is likely why depression is linked to so many neurological conditions. You could ask to be referred to another neurologist prior to seeking the private route? Unsure if this is an option for you, I too had a clear MRI and have continued to suffer differing neurological symptoms. I completely understand the whole walking away feeling about an inch high. At the end of the day, you know your body and how it reacts - keep pushing the doctors and try not to let this get to you. Good luck K x
Thanks for the reply. G.P was really annoyed with the neuro as my ‘fits’ have taken place separately in front of him and another doc so he knows they’re not me telling storys. Unfortunately there is no other option for another neuro in my area so will have to pay but to tell you the truth I am so exhausted by it now I will gladly do so. Having terrible trouble with my eyes today. Everything dark grey and eyes only want to look down.It’s as if the muscles in the back of them won’t work. This on top of the vertigo makes me stagger around as if ive been at the sherry. Left side of face is cold and hands feel as if someone has scraped away all the skin and left the nerves exposed. Oh the joy! Shelley.x
Hi Shelley, I too am shocked at the way you have been treated.or not, eh?
Sounds like you have your GP on your side.
I went private in the beginning (1999), as the waiting list was 10 months!
I ended up seeing the same doc on NHS later on!
My 4 MRIs were normal and 15 years later, I`m still not much wiser!
I do hope someone helps you out.
luv Pollx
Hi ms43. I live right on the Scotish/English border so am going for my private consultation in bonnie Scotland ( had my NHS one in England). That way after my consultation I can be referred by my new neuro (private) back to himself but him wearing his NHS hat. All very complicated. My G.P has been great and very helpful, hate to think what it would be like if he wasn’t. I think one of the main reasons he suggested I go private is that my symptoms seem to getting worse quite quickly and I had to wait so long for the last consultation. Shelley.x
Has Epilepsy been ruled out?
No epilepsy hasn’t been ruled out but neuro told me he wouldn’t do any EEG as he didn’t feel as if there was any point. Shelley
Hi Shelly - this Scottish guy seems to know how to get round these systems and as you say you just need to know whats going on and then you can start to deal with it. Im new to this MS blogg and am horified to read about your plight - I hope you get some answers soon. x
Thanks very much. All the kind words from everybody has really given me a boost. Shelley.x
Hi iv just returned from nuerologist who has told me mine is all in my mind, iv been bad for 7 months (blurred vision, loss of balance, giddy, weakness in legs and burning at top of my leg ) iv had about 4 bad attacks in 7 months and fobbed off my mri scan on my brain ( didnt have spine one) didny show anything so im trying to get a lumber puncture, iv now decided to pay to see an MS specialist £ 200 consultation because iv had enough im a student nurse at 49 years of age and that nuero made me feel like an idiot has anyone else had this experiance.
Hi Mariajulia. I had the same experience last week and felt totally humiliated. I am doing the same thing as you as this has gone on now for over 5 years. Had to call paramedics out today as had another seizure (the ones the neuro said were all in my mind). Keep your chin up and keep fighting. You know your body and you know something’s wrong. Never let them make you doubt yourself. I haven’t had a lumbar puncture either as he said it was a waist of time he wouldn’t find any thing. Let me know when you get your private appointment through. I hope it gives you some answers soon.shelley.x