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Struggling to be taken seriously

Hi there, I’m new and hoping for some feedback or advice. I’m not diagnosed but have found myself facing a brick wall. Back in 2008/2009 I suffered from bad episodes of trigeminal neuralgia, put on various medication which I couldn’t function on. Saw a neurologist who scanned me then told me nothing wrong and put it down to stress. Symptoms eventually went away and in the meantime I’ve had days of neuralgia but weren’t as constant until… August 2012 I start to suffer with the neuralgia again but also have random shooting nerve pains, one day could be in my little finger and across knuckles, another day down my fore arm. Along with this I had burning sensations in patches on my legs or arms, pins n needles, dizziness, tiredness, itchy nerves, poor sleep and continued cognitive problems (recalling names, unable to finish sentences, poor memory). My gp gave me amitrypline, small dose of 20mg, which calmed neuralgia but didn’t touch any of the other pains. I eventually I saw neurologist at the beginning of feb this year who dismissed all my symptoms as “medically Unexplained” after normal examination but was willing to perform MRI “to put my mind at rest!” MRI of head and spine was done and results show 4-5 lesions in white matter of hemispheric region" but within normal limitations for a woman of my age" (34) and I have been discharged. Very frustrated now as have asked for second opinion but my surgery has to have 2doctors sign off the referral which my gp tells me wont be possible! Now coming off of amitrypline as making mid far too fuzzy and starting gabapentine to calm down nerve pains but symptoms continue and no further help offered to get a diagnosis. Have now got copies of brain MRI and hoping to get spine MRI pictures. Sorry for the long story but am now considering looking into private tests I.e spinal tap but otherwise don’t know what to do next. Any advice would be much appreciated Many thanx

Hello and welcome :slight_smile:

I hate the cop out of “age related lesions”. It’s true that we are more likely to have unexplained lesions as we get older, but the simple fact is that it is NOT normal for a 34 year old woman to have ANY lesions. However, at some point in history, someone somewhere decided that one per decade was OK and it’s been adopted all over the place :frowning:

The first thing I think I would ask for, if I were you, is a second opinion on the scans - your GPs may be more willing to entertain this idea than a second neuro opinion (which may be more expensive?).

While I was at the GP’s surgery, I would also ask for a thorough battery of blood tests including any possible vitamin or mineral that might cause my symptoms. The reason I say this is that you seem to have a lot of widespread symptoms and these are often associated with things like vitamin B12 deficiency (which can also cause lesions) rather than MS.

If the second opinion on the scans is that the lesions are non-specific and/or unrelated to your symptoms, then there is probably little point asking for a second neuro opinion at this time because you will probably just end up in the same place you are now. If the blood tests all come back clear too, then it may be a case of waiting for something new to happen :frowning: At least then, there may be something showing in the tests that will pinpoint the culprit.

I could be wrong, but the fact that the amitriptyline helped the neuralgia, but not the other symptoms, may suggest a non-neurological cause for them. I have no idea what that might be however, sorry :frowning: Perhaps ask your GP?

Karen x

Hi Karen

Thank you for your response. I had some blood screening done as a first port of call and all ok except calcium on the low side but not drastic and been resolved by daily a-z vitamin tablet. I have a Chiropractor visit every 3-4 weeks to get my neck manipulated which also has an affect on the pains, they become constant and more frequent for that evening along with the burning sensations, almost as if its released the nerves a little?

When I had my results I didnt get to see the neuro again just had a letter so feel like Ive had no-one to look at them with me and explain them. GP is basically saying no second referral at all hence the brick wall I seem to be facing. I have a weakness in my left arm, Im right handed, which they said was Tendonitus but is appearing not to be although my nerves in that arm are raw, Chiropractor cant do much with it

I suspect, as you has suggested, that I may need to wait to see if something else happens but just wanted opinions/advice as to whether anyone else had had these problems/symptoms.

Any advice is very welcome

Many thanks

hi,

when i read your post my stomach flipped, i am facing exeatly the same problems. i am older than you but like you i have been told the 5 white marks on my mri are age relatedand my neuro has told me i have medically unexplained symptoms. i have to use crutches to walk outside, indoors i use furniture and walls to help me balance. my memory is terrible i drop things have bladder issues, numbness in legs arms and face. tingling and burning, and fatigue this has been ongoing for nearly three years and i am getting worse. i cant work and my hubby has taken early retirement to be my carer.

i am lucky in having a very supportive gp and i have full disability benifits. i have had a lp and a battery of blood tests which all came back negative.

i am now having to see someone because they say that as the tests show no “clinical evidence” from the mri and lp, although evoke potential tests show something and i have little feeling in my feet and the neuros tests on examining me showed abnormal reactions, it is all in my head, and after e few sessions of counsiling i can be absolutly cured and go back to work!

so my brick wall is quiet high at the moment but knowing there is someone else who is going through exactly the same does give me a bit more strength to keep on. i know that i am not making this up or even subconsiouly ? letting it happen.

looks like we are going to fight this battle at the same time so good luck,

love lorraine

Lorraine Thank you so much for your response and I’m sorry to hear you are having such a bad time. It must be so frustrating for you to be physically affected and told the same as me.

Sorry pressed the wrong button! I’m just waiting to be told its all in my head, I’d like to see a neuro cope with these symptoms and tell themselves it doesn’t exist!! All the best Lorraine I hope you get the help you need and a diagnosis Best wishes Rachel