Investigations from scratch after 17 years with an unconfirmed diagnosis

Hello everyone, i am not a newbie here but its a long time since i posted about 2 years. I am finding things a bit rough at the minute and could do with some support from others who understand. I first started having problems in 1995 and was told by the first Neurologist i saw that i was probable MS, saw a second Neurologist 7 months later who is an MS specialist and he also said probable MS, in fact his words were more than 90% certain and he was being generous to himself allowing that percentage of being wrong, i took that to mean he was actually even more certain than the 90%, sorry i,m waffling. I went on to have an MRI, evoked potentials and a lumbar puncture all of which were normal but he was still certain MS was the cause, over the years have been told, " just because we cant see it doesn,t mean it isn,t there", and when i asked if this could be anything else he said no. So i got on with things as you do not much choice really, anyway have had 3 more MRI,s since then the last one being in 2010 as the last couple of years have been tough to say the least, it was normal apart from some " age related changes ". In summer 2010 i started having problems with one of my shoulders becoming painful on the advice of Neurologist saw a Rheumatologist who ruled out RA, Lupus amongst other things, had Physio and things have just gone downhill, the pain and discomfort i am in at the moment has me wanting to sit on the floor and cry like a toddler, trying to get any help with an unconfirmed diagnosis is a nightmare, was referred back to the Neurologist they said they couldn,t do anything for me, my GP has been great and she referred me on to somewhere else and i saw the Neuro there last wk, but whilst waiting for the appointment to come through was referred urgently back to Rheumatologsit in January saw him, once again he rechecked things from before, all normal except my ANA was " slightly positive " but was non specific and when broken down was negative and not accountable for my symptoms, what ever that means : ). Also one of my LFT,s was outside normal range, having that rechecked next week. If your still reading thanks, my heads in a whirl with everything, anyway saw the Neuro last wk and she has started all the investigations from scratch, i guess at the moment i,m just so fed up with it all just needed to get it out somewhere. The last 18 months has thrown up joint pains, muscle tightness and weakness and the pain is horrendous trying to get anything to help i feel like i,m flogging a dead horse, and also for the first time i,m actually thinking the probable MS diagnosis may be wrong. Behcets has been in my head for a number of reasons over the years but this last few months even more so and i have asked them to look into it for my sanity as the thought terrifies me it has been mentioned to me once before when i was investigated for coughing up blood so it,s not something i,ve plucked out of thin air i also have a skin condition which is common in Behcets, i know it can mimic MS and can be hard to distinguish between the two, MS is something i,ve got my head around over the last 17 years and i,ve never doubted the experts until now. I read a lot of posts on here and always take an interest in Polls posts so if your reading this Poll, you have my every sympathy with your numpty Neuro,s : ). Thanks so much for letting me get this off my chest, think i just need to know others understand.


Good heavens - 17 years!!! How terribly, incredibly frustrating!

The things that struck me from your post are that it must be good that this new neuro is starting from scratch (perhaps, at last, you’ll have some definite answers?), but that I would be curious about those “age-related changes” (were they really?) and I’m wondering what meds you’re on for your symptoms(?).

I don’t know anything about Behcets so I had a quick google. This site seemed to have a decent lot of info: . I’m sure you know loads about it already, but I’ve put the link for anyone reading who’s curious.

I really hope that the new neuro can get to the bottom of it all.

Karen x

Hi Karen, thank you so much for your input, you always give such good advice on here so its much appreciated that you took the time to reply. The only medication i am taking at the moment is Amitrityline, along with a lot of heart meds but specifically for neuro pain just the Amitriptyline, my GP has mentioned trying Gabapentin but it seems she would rather wait for some input from the Neurologist needless to say this has got me nowhere up until now, it seems that no one knows what to do with me anymore i seem to be falling through the cracks for any help with no confirmed diagnosis. although i am having physio at the moment and also spoke with an Occupational Therapist on Wednesday, they too are stumped what to suggest when no one seems to have any idea what is causing my problems at the moment. To me my muscles are so tight and weak in my left arm at the moment and the pain at times could reduce me to tears, because it,s painful to move my shoulder they don,t know whether its joint related or the muscles that are the problem, i also have weakness in my back and stomach and get a lot of tightness in my thighs, along with the numbness, burning pain, muscle jerks, twitches and exhaustion i have had some pretty low times this past year, things have certainly got worse for me, my bladder also took on a mind of its own in the summer and leaked of its own accord thankfully at present seems to have abated. I have never really doubted the MS probable diagnosis until the last few months when i seem to be having so many things happening, had a number of other things going on over the years but it,s only recently that i,ve actually thought hang on a minute i,m either very unlucky or maybe they were wrong originally and theres something else going on thats responsible for everything, either that or theres now something else going on but they just can,t find it, after all the only symptoms i,ve had for 15 years were Neurological, sorry i,m wittering now it seems once i start a huge torrent comes spilling out. Thanks for listening (so to speak). : )


Sorry meant to say thanks for the info re : Behcets i have read a fair bit over the years so have an idea on the symptoms. By the way i,m 46.


It is tricky for GPs to prescribe if they don’t know for definite what the cause is because some meds that are fine for one condition are dangerous for another, but given that you have a probable MS diagnosis, I would have thought that it was fairly safe to give you meds that are OK for MS?

Gabapentin seems like a good move to my (unqualified!) mind. It’s sometimes prescribed for spasticity (tight muscles) as well as being a standard med for neuropathic pain, so it might help with all of your main symptoms. If I were you, I would go and beg my GP! “I’m in terrible pain. Please help. I won’t see my neuro for months. I can’t cope. Please help. You mentioned gabapentin. Could I please at least try it? etc.” Sometimes it really does work!

A good question might be to ask what conditions gabapentin is not allowed with. If they have nothing to do with your symptoms, then the GP may relent.

Ah! Wee problem: I’ve had a quick look on and there’s a warning for people with heart disease. You’d need to talk to your GP about that.

Are you seeing a neurophysio or a normal physio? A neurophysio would be better - they understand about things like spasticity.


Hi Marie, Rizzo alerted me to your post and your mention of me.

im gonna add you to my buddy list Marie and will talk to you more privately, as ive told my story so many times and some folk might be a tad fed up of seeing my name again!

Yes, you and I understand each other.

See you in PMs.

luv Pollx

Thanks ladies for your replies, Poll i have sent you a PM and i have added you to my buddy list. In reply to the Physio questions, it,s not a Neurophysio that i see, and it,s also too early to tell if it,s doing any good as to be honest she doesn,t really know what to do with me, i feel sorry for her as she is trying, i had Physio at the beginning of last year but it was stopped as it was just too painful to move my arm, she had a word with the Dr and i never heard another thing, my faith in the medical profession at times is pretty low but i can understand their dilemma, i must be a nightmare patient because i,m falling through the cracks so no one knows how to help which in turn makes me feel awful, i feel like i,m being such a bother to folk, i really do have to change my mindset as thinking about others feelings all the time is doing me no good, i have to learn to be more assertive and stand up for myself. Thanks for your replies it feels really good to get things off my chest, maybe if i let it all out here my hubby won,t have to listen to me going on and on : ). I have an MRI on the 19th of this month, so we shall see, i,ve no faith though that they will have an answer one way or the other, a diagnosis to me doesn,t change anything it is just a label but it seems without one i,m not going to get any help or support at all, they just seem to fob me off and wash their hands of me, my GP said this to me and it was her idea to send me somewhere else for another opinion so she is good thankfully.