suspecting a disorder trying to getting assessed properly, am lost, please read if you can

I'm here because im at a loss.. completely. This all started with shooting pain up my face trigeminal nueralgia was suspected ofcourse it took a while to get to somewhere that considered it. I have suffered with chronic pain, muscular problems, tingling, numbness i think its like i just cant feel my legs no matter how hard i kick or whatever they might as well not be there, itching and tingling in my hands alot to im so distracted and i'll end up crying because of it.. horrid spasms or shooting pains, I get odd sensations not vertigo but Its like my feet wont communicate i feel really odd and i just dont know where to put my feet.. I've struggled with incontinece to an embarassing level.. my co-ordination has decreased i uesd to be so sharp and now its like everything takes forever to reach my brain, my eye sight worsens at times ut dont know if its connected. I have been so majorly tired for so many years i often just dont have energy, at heart im active a lover of mountains and the outdoors id be off but I just cant, I used to be a backpacker but now in the past two to three years my pain has become debilitating,my balance on unsteady ground was bad and I'd just twist my ankles until it became unbearable to carry on, at my worst I cant walk bearly around the house without pain and often i can't get out of bed for hours. I have always been told this was due to my emotional problems for years! Me and my mum (a specialist nurse) have known or more felt something was beneathe this but its always been poo-pooed because of my emotional health for years this has happened and eventually i began to believe it. I started seeing a chiropractor for my chronic pain and I have treatment and biomechanical training for stabalisation, a year has passed and im still in debiliating pain and exhaustion... I feel the need to lie when they ask how i am almost embarressed or ashamed that im still in pain thinking they'll think im over exagerating or dont want to feel better when really trying to walk around is so hard, everything is so hard, i just dont seem without pain. Im so tired from all of this with no answers it just is there and doesnt seem to get easier its like such a cloud. It was only when we looked at causes of trigeminal neuralgia as its uncommon under 50.. im turning 19  that we saw ms and it was like ticking boxes but I have had an mri but they were only looking for tumours or growths and im told nothing is abnormal, there is no cause for the nueralgia, said it was my anxiety and now im being referred to a pain clinic. I have gone all around to try and get help for this pain...and all the other things. Its more than emotional health as id have relief and I may get some but then im in the fog again for months, relief is temporary. I'm so tired of being ignored or dismissed something else is going on... if it was psychological it'd have gone. Im worried that as i've been refered from a facial unit I wont be heard out about my other problems.. I'm very tired from pain its making me increasingly depressed and knowing nothing is going to be done is heart breaking. I'm worried I will go to this pain unit they will only want to know of facial pain and ignore my pleas and it is pleas to hear out everything else and once again i'll be left in the dark alone and in a hell of a lot of pain just a lifeless heavy world that i travel alone... Im stuck, also these clinics seem to be for people who either have unkown causes or diagnosis when I actually havent been diagnosed people havent bothered checking because they think they dont need to look...I dont know whats going to happen or what to do... I just want to be heard this time, I feel deep in my gut that there is something more than atypical pain or fatigue.. it doesnt explain everything else that shouldnt be happening.. but I feel like ive done this many times now and that people just dont want to know. I hope you dont mind me posting here and I hope that some way I can be of help around here and maybe get some answers in return. Does anyone understand? I hope so... I feel at a dead end with a brick wall around me. I'll appreciate anything i get.

1 Like

OMG; no wonder you feel lost. You poor thing. You're only 19 too? Life can be so cruel letdown


First thing I'm thinking is what pain meds are you on?


Next is what specialists have you seen?


You've had an MRI of your brain, but did they do a full range of scans? (You can ask for a copy of your scans - it will say on there. You'll have to pay though; usually about £20.)


Also, have you had a spinal MRI scan?


What is your GP saying? Is he/she supportive? (Having a supportive GP is invaluable when you don't have a diagnosis.)


Whatever's going on, you are more than welcome here and, yes, we really do understand.


Karen x


PS Best to try and space out your writing a bit in future - some of the people on here struggle with a lot of text in one block.

My heart goes out to you. I have a twenty four year old daughter whose had problems since she was 14. It's taken years but we have finally been able to sort some things out.

At nineteen incontinence is not normal and as you are complaining of problems with your legs and incoordination this should be taken seriously. It may indicate a problem in your spinal cord.

Pain and fatigue could go with many disorders, fibromyalgia, ME and rheumatology problems.

Many people will relate to not being taken seriously if they've had emotional problems. Some Dr's do tend to put all of your symptoms down to that.

As Karen said you have come to the right place

Jacqui x

Thank you for your replies im so glad im allowed here, and I apologise about the writing I should have realised as I cant read alot of block, i think I just didnt think to look back before posting, I will be more careful and thoughtful next time. 

First thing I'm thinking is what pain meds are you on?                                                                                                                  Because I havent been diagnosed with anything specific no-one has been willing to prescribe me anything stronger than over the counter, often telling me to stretch and get some sleep or relax.. So the only pain killers I can get is the typical ibuprofen, paracetamol and codeine or aspirin.. none of which touch it. 

Next is what specialists have you seen?                                                                                                                                           For the first year of my problems the only person I saw was my GP who even before my emotional health became said im young its probably hormones or stress as i shouldnt be getting that pain. He has always been that way... I think if the pain clinic doesnt help im going to go to one of the other gp's in my local surgery.

I have been under a womans health consultant who said she wouldnt do anything until im in a healthy psychological state who ever is in a healthy state? dental and maxiofascial consultants.. who I have seen in the past year for three appointments the maxiofascial is the one I have just seen and says he only does face and dental not nerves unless its surgical he was the one who has referred me to the pain clinic

Most of this has happened in the past year.. the womans health im still under since 2010 but they havent seen me any further. My parents really wish i could see a nuerologist but I dont feel I can demand that.. 

You've had an MRI of your brain, but did they do a full range of scans? (You can ask for a copy of your scans - it will say on there. You'll have to pay though; usually about £20.)                                                                                                                        They only did face and right side of brain I think and back of skull but I have not had a spinal one or of any other area, My back is where my most debilitating pain is or the most insistant pain.. not sure which. I may ask for a copy of scans may be a good idea, how would you go about that?  

I'm considering writing down my history for the pain clinic.. I mean it may be psycho somatic pain or muscular problems and fatigue but I would like to have anything else ruled out before.. because if I sit still or im lying down and I just feel the different stuff going on and then I try to walk about and other things occur.. I atleast want my fears denied and proven as non existant before they tell me what is and what not... I could have cried when the last doctor said its probably your anxiety. 

Thank you so much for being here I hope I can help you all in return some ways, I really appreciate it. 

Thank you to User02 and mary2000 x 

I am horrified that you have not been offered a neuropathic painkiller to at least try! I think you need to go to your GP and ask for something (e.g. amitriptyline). [Neuropathic painkillers are painkillers for nerve pain.]


Even if your pain is psycho-somatic and therefore not caused by nerve damage, it is still caused by brain activity which responds to neuropathic painkillers and it still HURTS! (And perhaps if you got your pain under control you would have the chance to focus more on your mental health?)


It is absolutely not necessary to have a diagnosis for a GP to prescribe pain relief. So, please ask very firmly for help. If they refuse, get yourself a new GP!


Who was it that referred you for the MRI? You haven't seen a neurologist? If you haven't seen a neurologist, then I think you should definitely change GP! It would be absolutely diabolical for someone with your symptoms not to be referred to a neuro. And what the hell has your age got to do with it??? A 2yo was diagnosed with MS in the UK last year!


You can get a copy of your MRI scan by calling the MRI Unit where it was done. Tbh though, all you need to know is exactly what scans were done (type, orientation and number of slices) & let me know - I'll tell you if they included the right ones for MS. If you do buy a copy, it should say on the images.


It is time for you to start being assertive. Get your mum along with you and stick together - you need to see a neurologist and you need immediate neuropathic pain relief.


Go get 'em!

Karen x


Thank you so much! Your encouragement means a lot and has given me the boost I need, I have found details for the MRI unit I had mine done and will ring them on monday.

I think I will also book a GP appointment very soon, particularly if I have to wait for the pain clinic appointment which will most likely atleast be a month or so, I doubt they put it as an urgent request and so a waiting list no doubt.

Thank you again, Take care of yourself x  

Hi Little Sparrow,

Take note of what Karen has said - she probably knows more about MRI scans that anyone else who posts here.

You may not want to do it, but you have an absolute right to change GPs if you want to.  A friend of mine did this last year - it was no hassle, and suddenly she found that she was being taken seriously.

The shooting pains are neuropathic for sure - I was given Gabapentin for mine (which stopped them dead) and another alternative is Pregabalin.  So there are at least three meds that you could be given.  Just insist on being given something.