How long??? What next??? Anyone else been here???

Hi Everyone

I’ve not been on here for a while as I have been plodding along as best I can, burying my head in the sand, trying to stay positive by ignoring my health issues. I am thankfully back at work following a long five month absence but things still are not quite right.

My ‘journey’ began back in June 2011 when I suddenly and for no apparent reason developed double vision and numbness across the right side of my face, neck and down my right arm into my hand (the double vision remains to this day – corrected with prism glasses).

To cut a long story short, I’ve had a whole host of ‘neurological’ type symptoms ever since and there have been a few ‘secondary’ type diagnoses along the way (confirmed Diplopia, Reflux, O.B.S., Sciatica and Raynaud’s Phenomenon). Yep, I’ve also had all the usual culprits including essential tremor, muscle twitching, heat intolerance, shooting electric shock type pain, fatigue, heavy limbs, stinging and light sensitive eyes, mobility issues and other weird and wonderful sensations including bubbling, popping, burning and crawling / creeping under my skin.

As I suspect many others on here may have experienced, when I first started seeing my GP there was a lot of discussion about anxiety. I accepted that this was an issue at the time albeit secondary to my initial symptoms, which were by that time causing problems at work. This topic is no longer discussed – I have made it clear that I am happy to attend for ‘psychological’ help or C.B.T. but am told that this is not necessary in my case.

Prior to all of this, I had experienced a number of health issues over the years which seemed insignificant at the time. First up was a severe illness when I was in my 20’s which led to hospitalization for over a week. A biopsy was taken and the illness was later put down to Epstein Barr although Hodgkin’s was suspected initially. I have also been taken into hospital on a number of occasions over the years with severe chest pain / tightness (heart attack ruled out every time but no other conclusion made as far as I was made aware).

Anyway, my dilemma is this. Now 39, I have no ‘overall’ diagnosis as such yet have been taking a vast array of medicines long-term upon direction to help alleviate my symptoms (Movicol, Omeprazole, Codeine, Mirtazapine, Amitriptyline, Pregabalin, Propranolol and other OTC painkillers…).

Things just don’t seem to add up. Why am I on all this stuff if the experts can find nothing wrong with me? Conversely, why, if there is nothing ‘physically’ wrong with me am I not being offered ‘psychological’ treatment? I feel totally in the dark with so many unanswered questions. Ever feel like you are a nuisance to the medical profession or a hypochondriac?

When I last saw my GP and upon being pressed, it was admitted that MS cannot be ruled out. I was told that I must be patient ‘as physical signs may not show up in tests until 10-20 years down the line’. It transpires that I have not been discharged by the Neurologist who I have seen twice (I’ve had an MRI, EEG, EMG, NCV).There was a slight issue with the NCV apparently (impaired sensory conduction) but ‘nothing to worry about’.

Does anyone know what the doctor’s might be waiting for before taking things to the next level? What lies ahead I wonder?

Is there anyone else out there in my predicament? How are you coping with the uncertainty?

No one seems to understand that a diagnosis, whatever it be, will enable me to move forward by providing that missing link I need to seek ‘self-help’ specific to whatever ‘condition’ it is that I have…

Hi, and welcome back

Yes, I can really empathise with what you’re going through! I’ve been in Limboland for 5 years now, and although I’ve had some ‘borderline’ tests and marked weakness in my left leg on an SSEP test, I’ve had clear MRI + LP so no diagnosis!

When I first saw a Neurologist in 2008, she said that something neurological was going on, but like your doc, she said “sometimes it takes 10 years for things to show up in tests that make sense of the symptoms”!

My main problems now are pain (in my legs) and fatigue. I can only walk for 10mins before I need to rest, and the neuropathic pain is awful sometimes - like I’m sitting on broken glass, or my legs are being gripped in a vice which has razor blades in it! I take Pregabalin for this.

Things have steadily progressed, without a letup over the 5 years. Primary progressive MS was mentioned by one doc, but of course nothing has shown on MRI.

Fortunately my new Neuro has said he believes me, but just cannot give me answers at the moment. Limboland is certainly a hard place to be, but there are those of us who really understand, so do keep posting…and keep positive

Bren x

Hi there, yes I certainly understand your need for a diagnosis for definite, I,ve been in this position for 17 years, MS is strongly suspected but still can,t be confirmed. I,ve recently started investigations from scratch with a new Neurologist and received a letter on Monday saying my recent MRI was normal, I,ve had 5 over the years. It was what I expected to be honest, I,m waiting for an appointment to see the Neuro to see what she says and where we go from here but I’m not expecting miracles. I read and hear so often " a label doesn’t make any difference" that really gets my back up as of course it does it removes that last lingering doubt that they may be wrong, I feel like I,ve got a big question mark over my head and my peace of mind is shot to ribbons, I will add though I,ve only recently started to feel like this as the last couple of years have been a bit tough and my probs have got worse up until then I just plodded on dealing with things with a little bit of head in the sand thrown in, all I want is some help with the pain I am having but 2 years down the line it seems without that “label” I can,t get any help, although I will say my Physio has been great at trying to help even though she doesn’t,t know what to do with me either. I don,t know how any of us cope in limbo to be honest, somehow we just do and it does get easier with time, I,ve learned to expect no miracles with Neurology : )